"I know now that the hundreds of people praying for me - people I don't know, from different countries and religious beliefs - is what pushed me through."
My name is Aurora and I’m living with metastatic breast cancer [MBC]. What does that mean for me?
This diagnosis has accelerated the end of my working life. I am only 56 years old and should be planning my retirement. Instead, I had to take permanent disability as the job I had said, if I returned, I would be expected to perform at the level I had before to my diagnosis, which would be impossible for me now.
I’m on Medicare because I was forced by the SSA [Social Security Administration]. If it had been up to me, I would have continued with my healthcare.gov coverage, which was a lot cheaper than what they are discounting from my disability check. Medicare only pays 80% of my medical bills, and I am accumulating debt.
I want my story to reach the policy makers that work with healthcare reform. I believe that MBC needs more exposure, more funding and more research. I also think that oncologists should be required by their Boards to be up to date in the newest available treatments. In my experience, I’ve learned more about treatments and their side effects from other MBC patients than I have from my doctor.
I find my motivation from my daughter and grandson. I want to be here for many years to see my daughter succeed as a lawyer and see my grandson grow up. I also want another grandchild. My son-in-law and I have made a pact – he’ll put everything he can into bringing a baby girl into the world if I stick around for at least 3 more years. A baby girl showing up is [one of] my goals, but my long-term goal is to be an outlier in statistics and stay around for 10, 15, 20 years. Thankfully, I am feeling OK and the treatment seems to be working. Although, at my last doctor appointment, she indicated that my tumor markers are raising so she may have to switch the treatment. At this point, I seem to know more than the doctor. I know for a fact that the [drug combo] I’m on can take up to 5 or 6 months to bring results – and I’m only on my 4th month.
I gain strength from prayer and friends who understand what I’m going through. I pray for other MBC patients and their families. In 2013, cancer caused me to be in the hospital for 3 months, due to complications from surgery to my femur. I know now that the hundreds of people praying for me – people I don’t know, from different countries and religious beliefs – is what pushed me through.
The most important thing I’ve learned from this experience with cancer is that it has brought my awareness of my own mortality to the front. I’ve learned to live in the here-and-now. I’m enjoying different things with my family, such as water-pistol fights between my daughter, her husband, my grandson and me…in the electric wheelchair. We all get thoroughly soaked. My advice for those newly diagnosed is, “Live to the fullest, we don’t have an expiration date in our foreheads.”
Cancer is not one disease, it’s many. As such, I believe that finding ONE cure for all may not be attainable, but more research can lead to MBC being treated as a chronic disease. So, I ask those in the Moonshot program to hurry up and approve, and move forward with new treatments. I want the MBC community to become a grassroots movement, like the AIDS community became in the 80’s, so that the whole country becomes aware of MBC. I believe that will be the only way that the molasses at the FDA will start approving new treatments faster. I thank It’s About Time MBC for being part of this incipient movement! “Let’s roll!”
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