When I first learned of my genetic mutation back in June, I don’t think I had a clue about what I would really be facing in the coming months. When I spoke to the geneticist, I handled it the way I’ve handled any distressing news -- like a soldier.
I think back to when my pediatrician and I realized that my youngest son might have autism; the doctor grabbed me by the arm, looked into my eyes and said, “are you OK?” Unwaveringly, I looked back at him and said, “there is someone in there and I’m going to draw him out.” Then I sprang into action by researching and getting him every available therapy for children with autism. At the age of six, my son still has some issues, but he has graduated speech therapy and spends 70% of his school day in a classroom with typical children.
When my father, a Vietnam Vet, passed away, I remember the young soldier from the honor guard at his funeral, with her white gloves and tightly pulled back bun, handing me the folded flag that lay on his casket. I hysterically cried when she said “On behalf of the President of the United States, the United States Army, and a grateful Nation, please accept this flag as a symbol of our appreciation for your loved one's honorable and faithful service.” Even in that tough moment, in my head I told myself to be brave, stand tall and receive this honor proudly. Through the tears, I stood strong, looked into the officer’s eyes as Taps played in the background, and she ended the service.
Three days after burying my dad, when I was diagnosed with a brain tumor, I laughed into the phone when the doctor told me and said, “are you f-ing kidding me?” Again, I valiantly moved forward, finding a doctor and getting tested for years to follow making sure it was safe for me to have more children and that this tumor was something that would likely not affect me in the future. That year, I also had to travel an hour each way, several times a week, to and from my father’s house to get rid of all his “collectibles.” My father’s house legitimately could have been on an episode of hoarders, so it was not your typical situation. During that year, I also suffered a miscarriage…Like a trooper, I kept moving forward. We eventually sold his house and I went on to have two more children.
I am fully aware that life is a rollercoaster. Everyone on this earth has their struggles. I have learned to thoroughly enjoy the good times and to take the tough times in stride. If you count your blessings more than you focus on battles, you live a happier life. I know this…
When the geneticist called to tell me that I tested positive for the CHEK2 genetic mutation, which put me in a high risk category for getting breast cancer, my immediate reaction was to get a double mastectomy. I found GREAT doctors who came highly recommended. I went to the mecca for cancer treatment -- Sloan Kettering -- to meet with their doctors for a second opinion. Meeting the plastic surgeon at Sloan was when I first had the pangs of fear and vulnerability. The doctor’s assistant showed me pictures of women whose breasts the surgeon had reconstructed with implants. I almost started crying right then and there. The reconstructed breasts she showed me did not look natural at all. I am not young, but I am not that old either. I didn’t want to go through the rest of my life looking like those pictures I had seen. My husband, the good man he is, made no comment about the pictures we looked at that day.
Later when he and I were discussing what to do next, because I did not want that particular plastic surgeon reconstructing my breast, he admitted that he thought her work was not very natural looking either. I was scheduled to see another pair of doctors when I received a phone call from a plastic surgeon that I met with previously and loved. He was not covered by my insurance. He wanted to check in on me to see if I had any luck finding another doctor. At that point, knowing how great of a doctor he is, I decided to try to get my insurance company to cover him as an in-network provider and they did! This was a huge victory and relief so we set the date for the surgery at two months away.
Setting the surgery date put in motion a flood of emotions that I was just not prepared for. I am used to being strong, logical and practical. The impending removal of my breasts, to be replaced with something unnatural, sent me into a tailspin. I did not know how to process feeling so vulnerable and weak at times. And in spite of how strong I know I am, I never thought my womanhood would be shaken the way it has been.
I have always wanted to look good for my husband. When we were younger, I used to love how he couldn’t take his eyes off of me. Those days when we were in the bar and would look into each other’s eyes, and it was like we were the only two standing there although dozens of people were around us dancing and having a good time. The times that he would look at me and tell me that he was a lucky man and not just for my sparkling personality. I know that this surgery won’t take away his love for me, but for me to know that I am different for him, that is where I struggle.
I realized I had these feelings when I could barely get the words out to a friend to tell her that I do NOT want my husband to help me with my first shower or cleaning my bandages. I just can’t bear him seeing me that way.
Rationally, as much as I know that these worries are not as important as my life and my health, the emotions took over and there were times that I was leveled by the insecurity and fear. As much as I thought the holidays would be a distraction, I couldn’t get into the holiday spirit. We decorated our tree, but I don’t think I plugged in the lights once after the first night. My house has been in a constant state of disarray. I am not the most organized person, but the level of disorganization has been brought to a whole new level. I did not send out holiday cards -- first time ever. It’s as if my feet were stuck in mud and all I could do is stand still and watch what was happening around me.
Now that the surgery is days away, I have somewhat settled emotionally and am feeling stronger mentally. I learned that despite my tenacity and strength, I can still be vulnerable, weak and fearful. At first I resisted these feelings, but as time progressed, I became more understanding of myself and this process. I always tell friends to be kind and gentle to themselves, but sometimes things are much easier said than done. I had to take my own advice. The double mastectomy is so that I will stay healthy for my family, but the reconstruction is for me.
I have shared my journey for a few reasons. Writing started for me when I took my first memoir class at Project Write Now. I came to learn that I loved sharing my stories and hearing other people’s stories. What I have found over the past few months of documenting this journey is that when you open up and let people into your world, they respond. The kindness, compassion and thoughtfulness that people have shown me from near and far has been overwhelming and humbling.
Since I have been very candid about my inner thoughts during this sensitive time, I hope it encourages other people to share and connect on a deeper level. I have been supported and uplifted by more people than I can count. This is the beauty of life. And if everyone lived so openly and showed so much kindness to one another, we would all feel safer and happier in this crazy world.