Living Your New Reality with Metastatic Breast CancerOctober 13, 2015
October 13th is National Metastatic Breast Cancer Awareness Day. Through sharing information and stories like Sandra’s, below, we hope to build awareness and education of metastatic breast cancer.
Dr. Sandra Bishnoi, Ph.D., is a lecturer and research scientist at Rice University, and a mother of two children in Houston, Texas. In 2011, at age 37, she was diagnosed with Stage IV inflammatory breast cancer that had metastasized to her bones.
In the four and a half years since her initial metastatic diagnosis, her life has changed dramatically, and so has her perspective. She has had to adjust to what she calls her new reality: “I say my ‘new reality’ instead of ‘new normal’ because there’s nothing normal about chronic illness. Knowing that you’re going to die from a disease you have no control over—there’s nothing normal about that. It’s the reality I live with every day.”
“We have so much to learn about why this disease takes someone so young.”
Sandra has also become an avid advocate for research and for others living with metastatic breast cancer. She reviews grants applications and provides an important patient perspective. She also works to engage scientists and clinicians around the disease: “It’s been a roller coaster. Trying to manage working, parenting and advocacy work for the metastatic community, that’s a challenge in itself, but to manage it with ongoing treatment…There’s never been a dull moment in the last four and a half years.”
In our conversation with Sandra, she emphasized the need for research on the causes of metastatic disease and how to treat it. She also explained that her advocacy is mainly spurred not by her own disease, but by her commitment to others who have it, particularly a close friend who passed away: “We have so much to learn about why this disease takes someone so young. I’m one of the lucky ones. I’ve seen so many young women pass away in the last four years. I can’t stop being an advocate because we have so much work left to do. We’re so naïve about breast cancer.”
Here Sandra shares what she has learned adjusting to her new reality, and also provides suggestions for people who have been newly diagnosed as well as family and friends unsure of how to support the people in their lives who are living with metastatic disease.
“Learn everything you can about your own disease.”
For people living with metastatic breast cancer:
1. Knowledge is power.
Learn everything you can about your own disease. Breast cancer is such a wide spectrum. Even though I’m a Ph.D. scientist, I knew nothing about breast cancer when I received my own diagnosis. Sometimes you’re going to have to push your clinician and your clinical team, question them and ask what the other options are. The more you can start to speak their language, the more you can advocate for yourself. If you receive a diagnosis of metastatic breast cancer, it’s very easy to curl up in a ball, but you have to self-educate and be willing to learn as much as you can.
2. Take care of yourself physically and mentally.
For me, exercise has been a big part of being both physically and mentally healthy. I’ve also accepted that with the diagnosis comes a lot of anxiety, and that it’s important to seek out proper assistance when overwhelmed. I’ve had a lot of ups and downs emotionally, so recognizing it’s alright to need help has been really important to help me move past certain road blocks.
3. Let yourself mourn, then focus on acceptance.
I spent many years mourning my old life and my career—I’d spent so much time pouring myself into a particular path. It’s taken me a long time to accept that wasn’t in the cards for me. It doesn’t mean that I have personally failed at anything, this is just life. Being thankful for what I do have has helped me cope and accept my new reality.
4. Find a hobby that has nothing to do with cancer.
What’s really helped me recently is doing something I love that has nothing to do with cancer. For me, going back to teaching has been wonderful. I find teaching to give me great joy and fulfillment. Finding something that I enjoy that has nothing to do with cancer has been really important.
“Finding something I enjoy that has nothing to do with cancer has been really important.”
For family, friends and everyone else:
1. Make emotional support last.
For those that love and support newly diagnosed people, make sure to continue to do so even when they get past the initial whirlwind of treatment. People tend to come out and be supportive for that first year—but for the metastatic patient there’s no end, there’s no cure for us. Don’t stop the support just because the first round of chemo has ended. This is for life. We hope it will be a long and fruitful life, but recognize that these are people who will continuously need your emotional support. Sometimes you might get tired of hearing about cancer, but that’s that person’s life, that’s where they are, so just be there with them.
2. Help by sharing the burden.
Go with the patient to meet doctors and go with them to their appointments. By really listening to what the doctor has to say, you can help by taking on some of that burden of education because the patient may be tired, overwhelmed and physically weak from treatment. As a patient, you have so much anxiety that having another set of ears and another person asking good questions can literally be life changing.
3. Reaching out means a lot.
So many people have reached out to me and provided help during my journey. Providing meals, taking care of my kids to allow me to go on the Avon walks and meetings at the hospital, just to name a few examples—have been a huge help over the years.
4. Just be there—even if you’re uncomfortable.
Embrace the whole person; this is just a new part of their life. I’ve had friends who didn’t know what to say so they just stopped saying anything, and unfortunately we’ve lost touch. I think they were uncomfortable, and this happens. It’s important to be open and willing to talk about things. Sometimes the best thing is just to keep up the small talk—talk to them about their family, and about their life. They don’t stop being who they are just because they have cancer.