Amy Capello

Survivor

Inflammatory breast cancer thriver

You know how we’re all told not to Google our symptoms when we’re sick but we all do it anyways? April 2020 & I was doing just that. Everything came back with Inflammatory Breast Cancer, but obviously it was so rare and I was so young and healthy – having just gotten glowing reports from a physical just a few months prior – there was no way that could be it. Until it was.

April 22, 2020 I was diagnosed with Stage 3 IBC. I was one of the lucky ones because it showed up on the mammogram and ultrasound. A lot of my IBC sisters have to fight a long, hard battle for their diagnosis because it often doesn’t show up on those scans. They know something is wrong, but it’s so rare, doctors are wildly dismissive. One friend is still fighting to get someone to listen to her, and the doctor literally shrugged and told her to come back when she’s 40 after her mammogram came back clear. Her breast is swollen, extremely painful, and feels full of sand. We don’t know yet what it is, but I know I was lucky that mine showed up right away. I was lucky that I was Stage 3. Most women are shocked when I say I was lucky with Stage 3, but since IBC is only Staged in 3 or 4, I know how lucky I am.

My nurse husband was out of the state, helping at a hospital during the covid crisis, when I was diagnosed. I was alone when I found out and had to lie to him all day long because I couldn’t tell him I had cancer while he was fighting to save lives. I had to tell him over a video call that night. We had to support one another through the phone. And even though I had to do all of my appointments alone, chemo alone, radiation alone, all because of covid… even though my husband didn’t meet my oncologist until a year after treatment because he wasn’t allowed in the building during covid, somehow I still didn’t feel alone.

I was so blessed to have a tribe of breast cancer sisters, IBC sisters, flattie sisters, family, and friends. You really find your tribe when you through a diagnosis like this, especially at 38 years old.
I had 4 months of dose dense chemo (AC & Taxol), followed by a modified radical non-skin sparing double mastectomy, and 32 rounds of radiation (18 with the bolus), ending with six months of oral chemo to wrap it all up. It was less than 2 years ago and yet it feels like a lifetime ago. I forget about my cancer every day and am reminded of it every day as well. I am busy building my own company, raising my young son and two bonus daughters, being a wife. But then I’ll feel my port pinching when I go to bed and lay on my side. I can’t book a client one day because I have to get my hormone therapy at the oncologist. I see the 2.5 feet of scars on my concave, flat chest and my clothes fit differently. I’ve gained 50 pounds since starting hormone therapy. I wear a lymphedema sleeve and travel with a giant lymphedema pump.

But I am not a survivor, I am a thriver. I am living like I’m dying, even though I’m claiming a life long-lived. I didn’t go through this whole process to watch life go by with me on the sidelines or die with a list of “I wish I had”s. Inflammatory Breast Cancer kicked my YOLO into overdrive and I’ll be damned if I live a day wasted. Sometimes that means a nap in bed, sometimes it means telling someone no, sometimes it means letting my son snuggle on the couch all day with me. Every day it means I’m thankful for that day.
I know it’s probably not what most people would say, but I wouldn’t take my cancer back for anything. I know my mortality now. I know my worth. I know my beauty. I know who I am and what I’m here to do, and I’ll do it with abandon. Nothing can stop me from showing up and living this life – not IBC, not anything. I’m here for it all.