The Art of Giving: Sharing About Survivorship in Cancer
Three years ago, I felt a gravel-like lump on my left breast. It would turn out to be the defining moment of my life. My friends and family members tried to console me, saying not to worry – it might just be a benign cyst. I knew otherwise. Like a mother who instinctively knows the sex of her unborn child before an ultrasound can confirm it, I knew I had breast cancer. A few days later, a biopsy confirmed it: I had cancer.
I have always considered myself a survivor. As I wrote in my first book, “My Secrets of Survivorship: We Solved the Mystery!” I grew up knowing something was wrong with me. I lived with extreme pain and weakness. I tried my best to hide my symptoms to live a normal childhood. One white lie rolled into another and before I knew it, I was a wife and mother of five. When I couldn’t hold my baby in my arms because I had no strength left, I knew it was time to finally find out what was wrong with me. It was a mystery that took months to solve – I had Pompe disease, a crippling neuromuscular disorder that usually claims people at an early age.
The more the doctors and scientists researched, the more baffled they became by my case. My body doesn’t make enough of the acid alpha-glucosidase (GAA) enzyme to sustain me, yet I’m alive. The world has only seen this genetic code once before in a man living in the Netherlands. Unfortunately, there isn’t much else known about him. We don’t know how long he lived or his quality of life.
All I know is that, even before my breast cancer diagnosis, I shouldn’t be alive. In addition, I have complex regional pain syndrome, a chronic pain condition in my arm, and scoliosis, a sideways curvature of the spine that causes its share of pain. It’s doubtful I will live long enough to see old age, but whatever time I have left, I've vowed to use it to my full potential.
Breast cancer diagnosis
Living with these diseases, I continued to chug along, but when I felt the lump on my breast, everything changed. For the first time in my life, I was afraid. I was also mentally exhausted from fighting my other diseases. With my compromised immune system, fighting breast cancer was going to take physical and mental stamina. I didn’t think I had it in me.
A week after diagnosis, I had a lumpectomy and was relieved to learn the cancer had not metastasized. Because I have Pompe disease, radiation was ruled out. My doctors did not want to sign off on chemotherapy either, but I really had no choice. The chemotherapy turned out to help, but it was brutal on my body. There were many days during the treatment that I thought I would die.
To make matters worse, my husband and I were growing apart. As I went to war against breast cancer, I felt alone and completely outnumbered on the battlefield. My hand clutched a white flag of surrender, almost surrendering a dozen or more times.
As I reflect, I’m not sure why I didn’t succumb. Perhaps it was me wanting to live long enough to see my children grow up. Perhaps it was me being stubborn, a trait I happily inherited from my parents. Whatever it was, it wasn’t a miraculous turn of events. It was just one day at a time, deciding to continue for another day.
I was bedridden for weeks. Slowly but surely, my survival instincts came back. Somewhere during this time, I vowed to change – and give back by telling my story – if I lived through this ordeal.
When I could be on my feet for a few hours at a time, I organized support groups for cancer patients and family members. Eventually I co-created Cancer Soul Survivors — a foundation that gives support to those inflicted with all types of cancer. We would eventually donate this organization to the Advocate Good Shepherd Hospital in Barrington, Illinois.
This year I have been recording my experience for another book, “Survivorship: Breast Cancer at 40,” which should be out by the end of 2017.
I have also felt it was time to create a new organization, The Survivorship Foundation. Together with my family and some close friends, we have been giving out care baskets to cancer patients in Illinois and Florida, and we hope to go national soon.
Being diagnosed with breast cancer was truly the defining point of my life. It took something as serious as breast cancer to find my calling. Giving feeds my soul. Whether through writing books or volunteering, seeing people’s faces brighten up with a simple gesture is so rewarding. Whether it is giving your time, your talent, or your treasure, there is nothing more satisfactory than seeing a person’s eyes light up because you cared enough to give.
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