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When Mastitis isn't Mastitis: My Cancer Story, Part 1

May 27, 2016

"Is there a chance this could be Inflammatory Breast Cancer?"

 

"Absolutely not."

 

It was October. In the two months since Eli's birth, my midwife had been treating me for mastitis, a common breast feeding infection.  Antibiotics, heat compresses, massage, pumping....nothing alleviated the pain, and in fact, it was getting worse. I requested to see an OB in the same clinic. The appointment was brief and frustrating. I was chastised for showing up engorged, even though I explained that Eli refused to breastfeed on the inflamed side. I felt ridiculous for mentioning this rare and terrifying cancer that I'd read about online. I was "that" patient. I left with orders for a breast ultrasound.  The doctor was confident an abscess would be found. I started taking hour-long showers in the hottest water I could tolerate. Per the nurse's instructions, I tried balancing the pump on my right breast when Eli nursed on the left. Anything. Anything to clear the painful blockage. 

 

During the ultrasound, the technician talked about thickening of my skin and pools of inflammation. I've since learned these are textbook symptoms of IBC.

 

The OB called. No abscess. More antibiotics for mastitis. Try Harder. 

 

By November, I cried every time I talked about the pain. I was so tired that whenever I sat to feed or rock Eli, I fell asleep. Over Thanksgiving weekend, we started moving into our new house. My family came to help with the move and the holiday. I told them what I'd read about IBC while researching home remedies for mastitis. Inflammation, hardness, redness, swelling, no fever, but an elevated temperature on the breast itself, inverted nipple, orange peel-like skin....I had them. All.

 

I started calling doctors in Spokane, but it was the holidays and I was a new patient.  It would be February before anyone could see me. 

 

By January, Eli stopped gaining weight. We tried to supplement...four kinds of formula, ten brands of bottles. He refused everything. In desperation, we force-fed formula with a syringe. The pediatrician referred us to a Lactation Nurse. She had us try "Kangaroo Feeding." A tiny tube slips into the baby's mouth while they breast-feed. The other end is connected to a syringe of formula. He wasn't having it.  Occasionally I could sneak it in with his pacifier (below).

The best thing the Lactation Nurse did for me was take my health seriously. She called to follow up twice a week, asking if I had scheduled a second (third?) opinion. On a friend's recommendation, I finally made an appointment with a nurse practitioner in an OB clinic associated with Holy Family in Spokane. I would see her the following Thursday and stay in town to throw a baby shower the next weekend. I was looking forward to the appointment.

 

All I wanted was to feed my baby.

 

Cancer wasn't even on my mind. 

 #nolumpstillcancer

 

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