My friend’s 7-year-old daughter wore a pink dress. We had a play date and she knows pink is the color of breast cancer awareness. I brought glitter, colored paper and scissors. She had the stickers and the glue.
“Why can’t we go to the pool?” she asked.
Anabella, the Truth Teller.
“My skin is still in bad shape,’’ I told her. “There are wounds that haven’t healed, so I can’t have pool water near them, and a sunburn would be painful. It’s not worth the risk. But we can have fun here.”
Three years ago, I was diagnosed with breast cancer. I was 33. I’ve since had chemotherapy, a bilateral mastectomy and radiation. I’m one of the nearly 1.2 million cancer survivors in Florida, and like them, have had to adjust to the aftermath of treatment.
The American Cancer Society estimates about 40 percent of survivors nationwide are breast cancer survivors, many of whom have issues with breast reconstruction surgery due to damaged skin from radiation therapy.
“You were more fun,” she said. “We would jump and run and swim and sing and dance. Now you get tired and you are not as happy.”
I gave up on having biological children after I had a hysterectomy last year. Keeping my ovaries and other reproductive organs increased my risk of getting sick again. I had been dreaming of having my own children since I was 16.
The decision was painful, but it was the right decision for me. I will adopt when the time is right.
I haven’t shown Anabella my most bothersome side effect; I’m afraid it will scare her. In December 2011, Dr. Robert DerHagopian, surgeon and medical director, Baptist Health Breast Center, and Dr. John Cassel, a South Miami plastic surgeon, performed a bilateral mastectomy, surgery to remove both breasts, with immediate reconstruction. I woke up with two temporary implants designed to be expanded with a saline solution. The implants made the experience less traumatizing.
Two years later, those implants had to be replaced. My radiated skin had not healed properly, causing tension. A skin rupture caused my implant to secrete a protein-rich yellowish liquid. Luckily, I did not have an infection.
“We have to get rid of the implant,” Dr. Rafael Gottenger, my new plastic surgeon, said with urgency.
Hours later, I had surgery to remove the left implant and would experience for the first time what it was like not to have a breast. Now I’m dealing with the yellowish liquid again. Gottenger is using syringes and large needles to drain the fluid. My skin looks like it did more than two years ago when I had radiation.
It’s difficult to go through, but Anabella won’t learn about this.
I was covered in glitter and stickers. Still, that didn’t stop her inquiring mind.
“How do people know they have cancer? Is it because their hair falls?”
It was a good question. An adult patient once told me she was so misinformed about the disease that she thought the hair loss was a side effect of cancer and not of the treatment. Another said she was diagnosed late because she didn’t feel sick, and she thought she was supposed to feel sick to have cancer.
“What’s worst about cancer?”
Dealing with the fear. I trust Gottenger, but I fear pain and pain-killers. Then, there is the fear of not knowing if the cancer cells are plotting in other parts of my body.
I explained it to Anabella this way:
“Imagine a woman has to walk around with a piano floating over her head. (I went to YouTube and played Clair de Lune on my phone.) She is wearing a T-shirt with a sign that says ‘Damaged Goods,’ so no one dares to get under the piano with her for long. She doesn’t know if and when that piano is going to fall.’’
I’m not alone in my plight. With improvements in targeted therapies, the population of cancer survivors is expected to increase to about 19 million nationwide in 2024. Some live with a high-risk of recurrence for some years after completing treatments. Five years is a mark most celebrate. I have three years in my pocket.
I had two scans Wednesday. One provided my oncologist, Dr. Marc E. Lippman of the University of Miami medical school, with images of my skeleton, and the other with images of my vital organs. I won’t know the results until Tuesday. I can be cancer-free, or I can undergo a new phase of treatment with more side effects. The suspense isn’t easy.
“That is ugly, ugly,” Anabella said. “She needs to change that T-shirt, and get someone to get rid of the piano and that music, YUCK.”
Anabella said I reminded her of how Elsa, a character in the Disney movie Frozen, must have felt when she went to hide in the mountains. I grabbed the scissors to cut out hearts, and explained that I was not alone and that my love of journalism brought me much joy. The second-grader interrupted me and turned into a Tibetan monk.
“The girl with the piano over her head, she needs to learn to live with that piano,” she said. “She needs to do what Elsa did and allow people to love her. She doesn’t have to be perfect for people to love her. I love you even when you are tired. Here, let’s put some glitter on this one. It needs to sparkle like your eyes.”
Andrea Torres, a former Miami Herald reporter, is a reporter for Local10.com