Living with Metastatic Breast Cancer 365 Days of the Year

October 13th is Metastatic Breast Cancer Awareness Day. For those living with Metastatic Breast Cancer, they are are fully aware of it 365 days of the year.  This blog is written by our client Rachelle. Her breast cancer has spread outside of the breast to other organs such as bones, liver, lung or brain. When this happens, it is called metastatic breast cancer or also known as stage IV breast cancer.  

In May of 2015, I heard the dreaded words, “you have cancer”; Stage 3c, aggressive. I had been married for four years at the time and my daughter was 17-months-old. I psyched myself up for a fight, something akin to a sprint. I powered through Taxol, AC, a mastectomy, and radiation and was declared “essentially cancer free”. Essentially because one never knows what’s happening on a cellular level.

Two months after finishing radiation, I bent over and fractured my back. I discovered then that the cancer had metastasized to my bones. I was surprised. I was not surprised. I was anguished, panicked, sad, mad, and at peace with “it is what it is” all at once. I realized this is no longer a sprint, it’s a marathon. My “I can do this myself and I don’t want to put people out” attitude fell by the wayside and I started accepting help, like food, rides, and emotional support. I no longer felt as much of a need to protect everyone from my pain. I found it interesting that when I was in treatment the first time, I looked much worse, much sicker, and it was easier for strangers to know I had cancer. Now that I was terminally ill but on chemo that spared my hair, I somehow looked healthier and people would assume I was better.

At this point, I have endured six chemotherapies, one PARP-inhibitor trial, seven-plus rounds of radiation (I lost count!), back surgery, six bone fractures, and enough procedures to loose count. I worked for 8 months after breaking my back, but eventually went on disability due to the fatigue, cognitive side-effects, and chronic pain. I seem to have had a harder time with daily life than some with metastatic disease since I haven’t been able to bend, lift over 10 pounds, or twist since I fractured my back in April of 2016. There have been many physical ups and downs and I have had to learn to adapt many times. At this point, I have discovered that cancer has metastasized to my brain and lungs and is starting to overwhelm my system, so I’m aware that my time has become more limited.

So this sounds pretty awful, right? Well, some of it is. But I have found so many ways to keep peace and a positive attitude through most of this. The BCRC and women I’ve met through the support groups are a lifeline. I heard about the BCRC from my oncologist’s office during my first visit and got started immediately. I have a counselor/social-worker background and know the importance of utilizing all possible support. The support luncheons and BCRC-sponsored FaceBook pages, particularly for metastatic women, have been invaluable. No one knows what we’re really going through until they go through it themselves. I have appreciated the patient navigation services, and Elaine, my patient navigator has linked me to assistance such as periodic house cleaning, transportation assistance, surgery garments, counseling referrals and linkage to Flatwater Foundation funds, and an always-present listening ear. People who financially support the BCRC and its services may never have any idea what the services mean to those of us receiving them.

Many other things have kept me going throughout this metastatic process. Allowing myself to feel my feelings is very important, as is finding a balance between sitting with the pain and knowing when it’s time to pull myself out of the hole and search out positivity and gratitude. Living in today is helpful. Will worrying today about future scans and progression help me in any way or change the outcome? NO! When I feel the panic creeping in, I stop, take some deep breaths, and pay attention to what I hear, feel, smell, and see now. The panic will inevitably creep back in. I try to get back to the present again. Wash, rinse, repeat.

Another suggestion is to find “your people”. These are the people who are comfortable sitting with your pain and don’t try to get you to move on with platitudes like “well, you’re a fighter” and “everything will be OK”. Find these people in support groups, at church, in your friend and family circle, and in therapy. Some people you were previously close to in life may not be these helpful people now. Limit time with people who are chronically negative, energy drainers, or simply can’t listen. It’s not their fault for how they are, but it’s not your responsibility to change them or let it affect your health.

Do things that give you a sense of meaning. I have been pretty physically limited for the past few years and have mourned the loss of my ability to be a counselor. I have found meaning in trying to support other women through the breast cancer process and being as present of a wife and mother as possible. I go out to listen to live music with my husband when I can. I make muffins with my now almost five-year-old daughter, let her learn how to crack the eggs, and spend time fishing out the shells. We draw, play games, read, and talk openly about the naturalness of the life and death cycle. All living things are born, live, and die. We read books about loss like “Nana Upstairs & Nana Downstairs”, “Chester Racoon and the Acorn Full of Memories”, “Lifetimes: The Beautiful Way to Explain Death to Children”, and “Water Bugs and Dragonflies: Explaining Death to Young Children” and I answer questions as openly as I can.

I’m big into legacy building. I made thumbprint necklaces for my daughter, mom and sister. I’ve written extensively in a journal for my daughter, leaving her with stories of my life, memories of her from birth, funny things she says, and instructions for handling life. I finished her baby book and recorded myself reading about 15 children’s books with life lessons and messages of how deep a mother’s love is. I compiled my most frequently cooked recipes and left messages of love and instructions for my husband (I may have told him more than once to give the child vegetables every day! Don’t forget the vegetables!). I most recently asked my friends to contribute to a book for me to see while I’m still alive and my daughter to inherit telling stories of our time together and things she should know about me. I wrote my obituary the way I want it and left funeral instructions. I acknowledge these things can be overwhelming for some, but they have given me great peace. There will never be an ideal time to do them – you just have to sit down a little here and there and do them if it’s something you choose to do.

In summary, be intentional about the way you live your life. Watch and protect your energy reserves, no apologies needed when you choose not to do things or limit exposure to energy-suckers. Own and feel your struggles, find strength in connection, and search out gratitude. All we have is today, so embrace it.

If you or someone you know is facing breast cancer and could use our support, please visit our website or call our helpline at 512-524-2560.

Consider making a donation to BCRC this October and give the gift that makes a real difference for the women in Central Texas facing breast cancer right NOW. Visit bcrc.org to learn more about how we can help, or click here if you wish to give back today.

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