I am a 31 year old wife, and mother to 4 young boys. I was diagnosed with stage IV metastatic breast in early 2016. 2 years prior I had a lump in my breast and had an ultrasound done, followed by a mammogram. I was told not to worry, it’s just a cyst. That I’m far to young to get breast cancer and there’s no family history. The “cyst” would resolve on its own. I believed they had to be right, I wasn’t worried. I became pregnant with our fourth child not long after that occurred. During my pregnancy the “cyst” did seem to be going away so I didn’t worry or think too much about it again. When my son was about 2 months old he started to refuse the breast that had the lump. I thought I had a clogged duct. Soon after, my breast started hurting and swelling. I thought I had mastitis. I’d had it with my older son, in that same breast.
I did everything I’d learned to try and treat it myself. I didn’t have health insurance, and we were paycheck to paycheck, so I didn’t want to go in and have another bill when I thought it could be resolved at home. I tried for several weeks with no improvement. The pain was getting worse. So I reached out to a lactation nurse who came to my home to see if she could help.
I remember she thought it was very odd that I didn’t have a fever. She was perplexed by my symptoms. We talked for some time and she left me with a breast pump to try and work out the “clog”. She asked that I keep her informed on how I was doing.
I tried and tried to fix it at home. The pain got so severe it would have me in tears. I still waited because I knew at the start of the New Year I was to be added to my husband’s insurance.
My husband asked me more than once to go in and get it checked. But I’d already had the breast checked and was told it wasn’t cancer, so why make more financial burden for my family??
My breast was horribly swollen, red, and it was So painful. When I was added to the insurance, 5 months after my son first refused the breast, I went to have it checked. The Dr. seemed unconcerned and went over all the different ways to work out a clog and treat mastitis. I assured her I’d tried everything. When she pulled the cover to do her exam she actually gasped. “Oh my goodness, I’ve never seen a breast look like this.” My heart started pounding and my stomach flipped. She started making phone calls and asked if she could take a picture so the breast surgeon she was referring me to could see the severity of the situation. That’s when I started to really get scared. Another week of waiting and seeing if antibiotics would make any difference. They did not.
Finally, a biopsy was done. The moment I got the news will always be a memory clear in my mind. It was mid-day and I got a call from the breast surgeon. My boys were all home so I took the call in my bedroom. She said that she was so sorry, but it is cancer. Like I’ve heard from so many others, everything she said after that was fuzzy and muffled. I couldn’t concentrate. She said she’d give me a few hours and then call me back with appointments for scans and to meet with an oncologist. I hung up and just started pacing my room. How could this be?! This can’t really be true?! Panic. I couldn’t think straight. It felt so surreal!
The next couple weeks were jammed full of scans, seeing the oncologist, and having surgery to install a port for chemo. After the scans my Oncologist called me in to tell me more bad news. My breast cancer was metastatic. It was in my lungs and in my liver. My torso was lit up like a Christmas tree in the PET scan. My Dr. assured me that there are women with my subtype of breast cancer (HER2+) that have been living with MBC for 20 years now. I could be one of those women.
During this time I had friends and family rallying behind us with support. My MOPS group that I’d only just joined that year stepped up and created a net of support and care. They coordinated meals and childcare when I was having appointments and feeling too ill from the chemo.
Friends put together a benefit with local rock bands to raise money to help us stay on our feet. There was a raffle with various items local businesses donated. The love and support was overwhelming, in the best way!!
I went through chemo and almost all of my tumors were gone. We continued with my “maintenance drugs” and made plans for a mastectomy and radiation. After radiation there were no more spots on my scans. What Relief!!
Throughout this time there have been big highs and terrible lows. It’s an incredibly difficult balance between being hopeful but prepared. Being optimistic, but still dealing with the reality of what this disease can do. Living life and making plans for the future, when you know you might not be here in that future.
I’m so very thankful to the Lord for His strength, peace, and assurances while trying to navigate this new life. Without Him I would’ve have just completely crumbled. My faith has only grown.
It’s always been important to us to spend quality time as a family. Now it feels urgent. It’s top priority along with trying to ensure that our boys feel safe and loved.
We’ve tried to explain everything that’s going on as light and simple as possible because they are so very young. They know mommy has been very sick. They know I need my medicine to keep the sickness from returning. And we’ve discussed things like hair loss and surgery before they happen so it isn’t a shock.
They have taken it all very well so far. They just want to take care of their mommy when she isn’t feeling well. They’re the sweetest! I can’t yet face the kind of serious talk that could come in the future. I want them innocent and happy without fearing they’ll lose me, for as long as possible. We cherish the small things and try to take as many opportunities to get out and have fun as we can.
We all love the outdoors so hiking trails and visits to the beach are our favorite escapes. Sometimes we just pile everyone into the van and start an adventure with no planned destination. We’ve made some of the most fun memories this way.
I’ve been a very private, introverted person in life. Never liked the spotlight. I don’t even like birthday parties (especially if they’re gonna sing that put-you-on-the-spot birthday song) because it’s too uncomfortable. But after diagnosis I had to push out of my comfort zone. I had to let people take care of me. I had to ask for help. (the agony!) I had to start opening up and be vulnerable in order to connect with other women with MBC because I realized their knowledge and support was so important, and desperately needed.
It was so crazy to me that before diagnosis I’d never heard the term Metastatic! But this was the terminal breast cancer? Why is it that myself and almost everyone I know has Zero knowledge about metastatic breast cancer when this is what kills??
The more I learned about how underfunded the research is for MBC, how ignored we’ve been, and how little is known by the public, I couldn’t keep quiet. 20 years and we’re still losing 40,000+ a year?! I had no idea! And neither did my friends or family. But we had all been “aware” of breast cancer. So we thought. Only 5-7 percent of breast cancer research money going to metastatic research?? How can this be?!
I’m breaking out of my shell to spread *true* breast cancer awareness. To do everything thing I can to raise awareness and funds for research for MBC. I may be flushed, heart pounding and voice shaky, but I will be advocating for the MBC community! I want to make a difference for the women And men with MBC. I don’t want any more families to watch their loved ones suffer and die from this disease. It can’t continue like this. 113 dying from this Every Day. It’s shocking, maddening, and heart breaking. I can’t sit back and do nothing. That’s just not an option. So now I’m trying to continue to learn as much as I can and keep advocating. Hoping to get better at speaking and being bold.
3 of my boys are in school and flourishing there. I love watching their personalities and curiosity’s develop. They are so much fun! My baby is now 2 and couldn’t be cuter. (Or more stubborn) He loves music and nugs (snuggles) with mom. He’s my little attachment, going everywhere I go. I adore my boys.
I recently had progression and am starting a new treatment. We didn’t think it would come back so fast, but this disease is so tricky. There are no guarantees. So we keep pushing on. I am determined to Live and Thrive as best I can and as long as I can. We’ll continue to make great memories with the kids and pour love into them. I hope to see them grow up and have their own families. I hope to hold grandbabies! I will continue to do what I can to advocate for more research and better treatments. And I will continue to cling to Hope and pray for better days, for all of us.