September 24, 2013
Inflammatory breast cancer patient: Living life fully after cancer treatment
BY Sandra Bishnoi
After I found out I had no evidence of disease (NED), my gynecologic oncologist told me to "live life fully."
I am not sure what this really means, but based on my conversation with her, she wastrying to say I should move forward with my life without constantly thinking about cancer.
Finding a "new normal" -- or a "new reality," as I like to say -- is a process most cancer patients go through. But knowing this hasn't made this process any easier, as my thoughts have changed with the different stages of my inflammatory breast cancer treatment.
Returning to work after inflammatory breast cancer treatment
I was a full-time assistant professor in chemistry when I was diagnosed with stage IV inflammatory breast cancer.
Now that I am two-and-a-half years out from my inflammatory breast cancer diagnosis and feeling better, I struggle with "What now?" Should I work or not work? Should I work part-time orfull-time? Is it possible to have a full-time job and not be too stressed out? Isit enough to teach classes part-time? Will I feel that I've made a great enough impact if I only work part-time?
As a scientist, can I play a role in improving patient outcomes? How do I give back to the breast cancer community without it taking over my life?
My personal struggle with NED
On a more personal level, I struggle with how to live with a disease that has no cure and for which I will be treated for the rest of my life. So, how do I deal with NED emotionally and mentally?
Part of me feels like I should enjoy an early retirement, because I might not live long enough to have a normal one. On the other hand, while I am feeling good, I want to do those things that I love and feel meaningful to me. How do I maintain a balance between good mental and physical health so that I can do the things that matter most to me?
Parenting with an incurable disease
I also have to cope with raising children while being treated for an incurable disease.
How do I raise healthy children in a world that seems to be intent on introducing and reinforcing bad habits? How do I remain honest with my kids about my condition without scaring them? How do I leave a legacy for them if my disease spreads?
"It is the journey that matters, not the destination"
For now, I take deep breaths and goback to basics.
I get out of bed. I feed and take care of my children. When I don't have too many doctors' appointments or kids at home, I exercise. I eat my veggies. I try to (and sometimes succeed) avoid sugar. I avoid alcohol.
So what's wrong with that? Nothing, they are all fine actions, but I am just cranky about it and feel incredibly empty at times.
I want to do something tangible to make a difference, but I don't know what to do. Is it enough to share my story with others and hope that it gives them a wake-up call that cancer can happen to anyone at any age and to take care of themselves?
In the last couple of months, I've done a series of radio and television interviews. Though I am happy to help spread the word, when it comes down to it, I'm not sure that I have had a tangible impact on the breast cancer community.
For now, I will continue searching for ways to combine my love of science and passion for advocacy and hope that a door will open up along the way. And as always, I will keep taking life one dayat a time, realizing that it is the journey that matters, not the destination.
Sandra Bishnoi was diagnosed with stage 4 inflammatorybreast cancer with bone metastasis in January 2011.
I struggle with how to live with a disease that has no cure and for which I will be treated for the rest of my life.