Perched on a stool and nervously 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 and announcing she had undergone a double mastectomy for hereditary cancer.
Watching 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 yet another year, one more decade and hopefully forever, however long that may be. 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 not available to the generations who came before us.
As thoughts drifted of Angelina and her mother, 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. She did not want her children to experience what many of us have, losing our parents to a difficult and devastating death.
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, with hereditary syndromes, feel the same feeling of uncertainty in living to the rhythm of a ticking clock as Angelina. We admire the love and responsibility she and most Moms demonstrate toward their children in standing up and doing what she needed to do because the possibility of leaving this world early simply wasn't acceptable.
It seems like yesterday when I entered my rite of passage into the world of hereditary cancer/ After being diagnosed, the startling realization hit I was truly my father’s daughter. The first thoughts were of desperation, “Oh my God, my kids, my husband…my drawers!”
“….my drawers????” Yes. I didn’t want anyone going through my dresser, 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 cheap, plastic, orange neon colored ring, a birthday gift my daughter won from 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…wait a minute, 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 interesting long stories of a life previously lived before entering the world of Lynch syndrome…and the fading memories from it which were tossed haphazardly in drawers.
The drawers represented where I had been in my life. The diagnosis represented a death sentence, setting the clock in motion and serving as a warning, reminding us where we all will go someday, some of us far too soon, than others…and I found myself there, sitting in between the past and the possible future, 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 packed in between. First was the colon...subtotal removal, a steady course of chemo cocktails and almost a year of feeling totally wasted. Then the prophylactic hysterectomy--didn't bother me, my body was programmed to kill me. Better it go, than me. Next was the gall bladder with the large, unknown polyp. I had never really bonded with it, so it wasn't much of 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. There was no Lynch syndrome surveillance for it. What had killed my grandmothers, and stalked my mother, was lurking somewhere in the shadows perhaps waiting for me. It had gotten every woman in our family, but me. The last family member affected with it had the tumor tested and it was determined to be a result of Lynch syndrome.
Risks were discussed with my oncologist, who 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 understood the fear and uncertainty, though I really tried hard to keep it masked. There really wasn’t ever a decision to be made to have a double mastectomy…there was only a decision of whether to opt for life or play Russian roulette with cancer. It was a no brainer. The only real decision was whether or not to undergo breast reconstruction and which choice was desired should it be chosen.
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 having to pay large copays under the new ACA, to battling with appointment clerks to get life saving screenings, to going through multiple surgeries, to participating in annual screenings, to worrying about loved ones, to fighting uncertainty and fear and compartmentalizingall of that to someplace else--anywhere else but the immediate.
We have to educate our physicians and teach them about Lynch syndrome and how to care for us. We have to encourage them to listen and allow us to participate in the decisions for care for us and our children. Adjustments have to be made within our lives, to change our diets, change our lifestyles, be prepared for the "down days" of our family members, put up with "black humor" from our kids and pretend to be offended at off color jokes at the holiday table about donated body parts. We 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 new ones. We have to educate our employers and harbor the guilt of missing work to meet all the cancer screenings, live with the fear of losing jobs because too much time is taken off work. We have to build and develop a support group, within our families and friends, to help care for one another as cancers rotate through family members. Some of us have to adjust and accept new 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. It is worth every moment of it!
Hopefully, cancer is something of the past for us and our families. 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 considerable hope, thankfully to genetics, genetics testing and treatment available today. Now, that is something great…
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.