Caregiver Perspective: Caring for my daughter with metastatic breast cancer

I’m often asked, “How do you do it”?  What they are asking is, how do I deal with the fact that my daughter Erica has terminal breast cancer.

When Erica was diagnosed with Stage IV Metastatic Breast Cancer, she was breastfeeding our beautiful granddaughter, Isobel. We had no family history of breast cancer. Her lump appeared to be a very non-worrisome clogged milk duct. But after we found out Erica indeed had breast cancer, a few days later (on my husband’s and my 25th wedding anniversary), we learned that the cancer had spread to her liver and bones. The reality of what all this meant was overwhelming.

Since Erica lives in Delaware and my husband and I live in Tampa, my first thought was just to get to her. I canceled all summer travel plans and I flew up in time for her first round of chemo. I’ll never forget sitting with her at the infusion center and realizing the profound paradox of watching poison drip into her newly installed port and being almost giddy at the thought that her cancer cells were dying, at the exact same moment realizing with every motherly protective instinct that I had, I should be ripping out that tube as it was poison!

The highs and lows of having a loved one with breast cancer continued when Erica’s very first scans showed that the chemo had worked, and the cancer was sleeping. This was the same month that everyone was celebrating pink ribbons and awareness for breast cancer. I bought into it and gave money to Komen, bought pink socks for everyone, and wore my pink ribbon.

Erica went 2 ½ years with scans showing No Evidence of Disease (NED), which I suppose created a false sense of security in us. She continued to work a full-time job, took care of her then 3-year-old Isobel and partner, along with her home and dog. Then one day she found another lump. This one turned out to be a completely different sub-type than the first. It was triple negative breast cancer and even more deadly.

As I stressed about her getting in to see a new specialist, my own health took a toll. My blood pressure was constantly elevated, even on medication. I was diagnosed with reflux issues and stress-induced asthma. I started to feel the frustration of not being there for my baby as often as I wanted even though I was traveling to be with her every couple of months. Erica had her own additional stress as her demanding job became even more demanding and she had another round of chemo on the horizon.

After Erica’s second round of chemo and clean scans from the neck down, she and her family flew to Florida to visit Disney and have a much-needed vacation. They were here for less than 24 hours when Erica had a grand-mal seizure, which proved to be brain metastasis. That meant a quiet couple of days until she could fly home and prepare for brain radiation. And then she found another lump. Another lumpectomy. Another completely different diagnosis of triple negative metaplastic breast cancer. Less than 1% of breast cancers are metaplastic. Because she couldn’t drive after having the seizure, I was traveling to be with her. She was graced with friends and neighbors who volunteered to drive her to work and back, and moms at Isobel’s pre-school took Isobel back and forth to school.

Through it all, if anything, our already close family became even closer. My other daughter Heather who lives in Virginia and has two little ones of her own would drive up and help Erica once chemo started. Our other daughters, Jackie and Emily who were in grad school would visit when they could. Our other daughther Melissa fundraised for Metavivor, and my husband Jack, would either travel with me to be with Erica, or stay home to manage the house and the pets. Our lives became like a fine oiled machine of educating people about Metavivor, raising money whenever we could, supporting Erica and Izzy, and trying to hang onto our faith that everything would be okay. 

Erica has become an incredible advocate for others with metastatic breast cancer. She has a Facebook page with close to 2,000 followers. She uses that page to educate and update others about living with metastatic breast cancer. She encourages friends in support groups and runs her own local group. I am so incredibly proud of her. I am also grateful she feels comfortable sharing late-night calls with me as she tells me about another friend who has just died or who has entered hospice. Grief is never easy, but for her it has become a daily way of life. My heart breaks for her with every new loss, while my heart freezes in fear knowing that she could be next.

I’ve learned to be grateful for every day with Erica. I am grateful for every person who sincerely offers up prayers and good thoughts. I’ve learned that I am not as strong as I thought I was, but I will always be strong for her.

Written by: Robin Bethune, Erica Griffiths (MBC Angel Advocate) Mother