Perched on a stool and rubbing sweaty hands on my Levis, as I quietly listened to the surgeon and my daughter discuss the upcoming double mastectomy procedure, my mind drifted to a week prior when Angelina Jolie stepped into the limelight, bringing the issue of hereditary cancer into the public eye, by announcing she had undergone a double mastectomy for hereditary cancer.
As I watched the interaction between my own child and her physician, my mind whirled with thoughts of Angelina’s family and the sacrifices Moms and Dads will make in order to simply be there for those so very important moments with our children, for just one more hour, one more day, one more year. I thought about her decision and her choice and her reasons, not so very different from our own. The simple desire to exist in this wonderful world and to be with our children tomorrow, a choice which was not available to the generations who came before us.
Thoughts of her and her mother wafted. I could feel the ache in her heart—the longing to cuddle next to her and during time of uncertainty hear the comforting consolation only a mother could whisper, that everything would be all right—and I could imagine the intense heartbreak in Angelina finding things weren't all right, that she would never again feel her mother’s arms around her or listen to her chiding reminders or be there for the important moments in her or her children's life.
I understand her decision. Like me and many of us, Angelina simply wanted more---for her children, for her life partner, for herself. All the money in the world, all the fame in the world, all the adoration in the world could not make up for what is truly important in this life—simply to love and be loved—to be there for our families.
We feel the same feeling of uncertainty in living to the rhythm of a ticking clock. We admire the love and responsibility she and all Moms demonstrate toward our children in standing up and doing what she needed to do because the possibility of leaving this world early simply wasn't acceptable.
I so very dearly remember the day of my Rite of Passage into the world of hereditary cancer and the realization I was truly my father’s daughter after being diagnosed. The first thought was one of desperation, “Oh my God, my kids, my husband…my drawers!”
“….my drawers????” Yes. I didn’t want anyone going through my dresser and throwing anything out, as the remants of the past within those drawers were archived as memories of a life well lived. To others they may seem filled with disorganized junk, but I knew where and what everything was—each item represented cherished moments--half torn tickets from Disneyland with the kids, the neon ring my daughter won in a gumball machine, a few old passports, my thirty-five year old Notre Dame t-shirt, badges from a career long finished, the hat from a serial killer…hat from a serial killer? Okay, okay, I'm digressing...and its a long story, but you get the idea. There was a series of wonderful and not so wonderful long stories of a life previously lived before entering the world of Lynch syndrome…and the fading memories from it were tossed haphazardly in drawers.
The drawers represented where I had been in my life. The diagnosis represented where we all go someday, some of us far too soon, than others…and I found myself there, in between, vulnerable with little choices or control. Everything depended upon chance, the good Lord and his helpers…my doctors.
That was five years ago, with a series of surgeries in between. First was the colon...subtotal removal, a steady course of chemo cocktails and almost of year of feeling totally wasted. Then the prophylactic hysterectomy--didn't bother me, my body was programmed to kill me. Better it than me. Next was the gall bladder with the large, unknown polyp. I had never bonded with it, so it really wasn't a loss. Those surgeries diminished cancer risk dramatically...the chances increased that I may just live to be an eccentric, wild, grand old dame.
Except for the history of breast cancer on Mom's side. It set my hair on edge. What had killed my grandmothers, and stalked my mother, was lurking somewhere in the shadows perhaps waiting for me. It had gotten every other woman in our family. Then it happened.
After my only sister was diagnosed with colorectal cancer, endometrial cancer and breast cancer, at one time, we adamantly insisted the breast tumor be tested for Lynch syndrome. A battle ensued between a genetic counselor who stood adamant it would not occur. "Why do it? Nobody would give any management care for a risk for Lynch syndrome breast cancer." she argued.
Actually, she was right. The "breast expert" to whom I was referred refused to give an MRI. "May I speak to your supervisor, please?" was a weapon I had become quite adept in using during battle. Seems he didn't consider the family history. Go figure...most doctors don't. It WAS a Lynch cancer, my sister chose to undergo a radical double mastectomy and found herself blessed. The second breast harbored another cancer which was not detectable upon the MRI. With the grace of God, she ducked a bullet and the women in our family were certified to be eligible for breast cancer screening.
When the time came, when my oncologist asked if I had ever considered a double mastectomy, I heaved a sigh of relief. He got it. "Your family history is horrendous." he advised. He understand the fear and uncertainty. There really wasn’t a decision to be made to have a double mastectomy…there was a decision of whether to opt for life or play Russian roulette with cancer. It was a no brainer. he only real decision was whether or not to undergo breast reconstruction and which choice was desired.
We, with Lynch syndrome, fight hard for life. Everything is a battle, it seems. From getting diagnosed, to getting our kids diagnosed, to fighting with insurance companies about coverage, to getting screening examinations, to going through multiple surgeries, to participating in annual screenings, to worry about loved ones, to fighting uncertainty and fear and compartmentalizing it someplace else.
We have to get physicians to listen to us and to be willing to learn how to care for us and encourage them to let us participate in our care. We have to make adjustments in our lives, change our diets, change our lifestyles, be prepared for the "down days" of our family members, put up with "black humor" and jokes about donated body parts and too often cry silently in the shower when we feel overwhelmed. Some of us have to give up beloved occupations and toss out old dreams and create ones which are new. Some of us have to adjust and accept limitations and through it all, be able to welcome a new dawn and be grateful for where we are and what we have. We have to work hard at balance, and if we get it right, we live.
The tradeoff for all that is a reduction in risk of cancer, a chance at life and far more special moments with our loved ones. Its worth every moment of it!
My sister will hopefully be the last to get a breast cancer in our family. Angelina and I will be the first women in our families not to get breast cancers. And as I watch my daughter prepare for her rite of passage into this world known as Lynch syndrome, it is with the knowledge, after undergoing her own double masectomy, she may be the very first person in our family never to EVER get a cancer. Remarkably, her children may be the first to be able to bear children who will not have a defective gene. There is so much hope, thankfully to genetics, genetics testing and treatment available today. Now, that is something great…
So, we understand why Angelina has stood up and publicly discussed what she has done. It took courage and strength. To her family she is a hero and that is all that matters. Her public quietly accepted the news, many, naturally, not knowing how to respond. Angelina didn’t need anyone’s approval, nor do I believe she wanted it. No more than I needed anyone’s approval or my sister or my daughter. She simply wanted life -- to be there for her children, someday. She wished to share that and a special message with others--a message of gratitude and one of hope.
The author is diagnosed with Lynch syndrome and is a late stage colorectal cancer survivor. Every person on her father's side of the family has been diagnosed with Lynch syndrome cancers, through her generation. The next generation may never experience a cancer with the hope of modern technology, aggressive cancer screenings and a great team of physicians caring for them.