I am a 47 year old wife and mother of two daughters, and I have stage 4 Metastatic Breast Cancer. I was diagnosed de novo (which means stage 4 at first bc diagnosis), on Christmas Day 2014, in an emergency room of a rural town. The shock I felt is indescribable. I never went through early stage bc, and it was terrifying to hear these exact words from the ER doctor: “I’m so sorry, you are 100% riddled with tumors.” These, surprisingly, were not the words that brought me to my knees. It was the confirmation from an oncologist that he was right that did it.
With innumerable mets (tumors) in my liver and my bones, I was in liver failure, and was told I had only days to live. DAYS?? How could this be possible? About 10 days earlier, I had attended a Christmas Party. But I didn’t have any drinks…I just didn’t feel too well…
After being informed formally that I had MBC, I ran out of the clinic,at full speed, sobbing, and fell hard into some sticker bushes, ending up bloody, cut up and bruised. I couldn’t process what I had just been told. What had I done wrong to get this? Nothing. MBC can happen to anyone, male or female, regardless of age, or steps taken for prevention, including a mastectomy.
My new life with MBC, my “new normal”, started with CT scans, bone scans, an MRI, liver biopsies and a monstrous amount of blood drawn for testing. I at this point, knowing I would always be on treatment, and I am terrified of needles, got a power port, which makes all of that much easier and mostly pain free. I then began my education about MBC, unfortunately by necessity. It was like a blow to the head with a tire iron learning that MBC has no cure. The focus for us is on having the best quality of life we can and extending our lives as much as possible. Our median life expectancy after diagnosis is about 3 years, and only about 24% make it to the 5 year mark. I knew then, what a long and difficult road this would be, as we are so underfunded, and unrecognized, even during Breast Cancer Awareness Month, we are not even mentioned by any bc organization. We are in fact not included, not invited to any pink parties, as we are seen as a “downer”, an elephant in the pink room. We are working to change that. No one wants to hear about the dying. It’s ok to talk about other deadly diseases, like heart disease, but talking about deadly cancers is considered taboo. I have something I’d like to say about that. We live great lives, full of love, good times, holiday memories, BBQ’s with friends and special times with our spouses, even knowing our prognosis. We have incredible stories to tell, if folks would just hear our voices!
I do not hide, brood in my bedroom, stay in bed for weeks (unless my health requires it), or spend every day crying. All of us have bad days, including myself, but my goal is to have many more good days than bad, even after having 3 TIA strokes.I live life with zest, joy and hope. My advocacy for MBC has brought me together with an amazing community of folks, all of us going through the same thing. And there are lots of us out there.
Coming up on Christmas Day, I will be upon my third year with MBC. I am doing very well, partly due to the pathology of my tumors, and partly because of my treatment. My cancer will never disappear, although right now I am stable. MBC patients endure treatment for the rest of their lives. There is no “done with treatment”, and yet we survive, we persevere, with smiles on our faces, love in our hearts and hopes of a cure.
Even with MBC, I live a very full life, doing activities and hobbies that make me happy. I love live music, art, traveling, the beach/ocean, hiking, swimming, anything Disney and fierecely advocating for MBC, every chance I get. I have accomplished more after my diagnosis at age 44 than in my entire life before that, and I am having a great time doing it!
My main focus is on getting more funding for research, as to prevent this from happening to others in the near future…your sisters, wives, daughters, mothers, friends, and brothers as well.
No one brings MBC on themselves. Anyone who has had early stage bc is at risk for having a metastatic recurrence. And some, like me, are stage 4 metastatic on initial diagnosis, despite having mammograms, doing self exams and early detection. I tried to live a very healthy lifestyle. I exercised, ate right, maintained a healthy weight, did not smoke or drink alcohol. I never had any symptoms until a few months before ending up in the hospital. Even though I have many tumors in my breasts, not one can be felt. Not by my doctors, my husband or myself. Early stage bc patients have between a 20-30% chance of having a metastatic recurrence, even if they thought they were cured. This is why we need MBC research funds. It will benefit us, as well as all early stagers. 2-10% of bc funds is all we get, which isn’t near enough for the 110 of us who die each day from MBC. Most of those funds are spent on awareness. Everyone is aware. What we need is a cure!
While I continue to advocate and push for more research dollars, I plan to live each and every day to the fullest, spending time with my family and friends and continue on my path with advocacy, my passion, but never stop hoping I will live long enough to see my daughters graduate, see them get married, and have grandchildren!
I love Kristi’s spirit! Her story lifted me up. I’m 7 yrs post-diagnosis with MBC de novo. I too hope to see a cure & support the need for funds to do more research.