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A letter to my mother 20 years after she died from Cervical Cancer

Dear Mom,

I often think of you as my guardian angel and that you can see me. You can see me driving a car fast like you begged me not to do so many times. You see me laughing. You see me with my friends. You see me making a tough decision, and having to be assertive. And when you see me and my brothers, you smile. It’s your big wide, gapped tooth smile. You smile and you put your head down, like I do when I smile. Sometimes with the smile you shake your head. You approve of what you see. You are pleased with us.

Do you know that January is Cervical Cancer Awareness month? Sometimes I really wish that I didn’t know that.  I really wish that the day in 1992 when you told me that you had cervical cancer never happened. Your smile was not there. You were sitting in a chair in your bedroom and you told me that you had cervical cancer. When you said it, your eyes closed and you grabbed your hands together. At the time, to me it felt like you were confessing something. I was too young and naïve to understand that you were scared. You said that there was an 85% survival rate. Because I thought this was a confession, I was relaxed. I relaxed during the whole conversation. There was no way that you would die.  My young, naïve mind said death happened to other peoples’ moms, not my mom.  Besides, I thought to myself, there would be no point of your death. You were too much of a good person.

I remember in 1995 coming to see you in the hospital and I was still relaxed.  My grandma was not. She pulled me into the hospital hallway and said that you were not going to get any better. In that moment, my heart went from the 8th floor of that hospital to laying on the ground on the street below. You were not supposed to die.

But in 1996 you did die. And I was left with a myriad of questions about the thing that took you from us. I did not hear many people talking about cervical cancer. What was HPV? How come you were not part of that 85% that lived?

In 2006, ten years after your death, I met a woman who explained all of this to me. Her name was Tamika and she was on a journey. She was racing to beat the clock to eradicate Cervical Cancer. When I learned about her journey, I saw Tamika and Friends as an army with soldiers. You always taught me to fight. I picked up my weapon and joined ranks with these cervical cancer soldiers. I was never going to let another woman get cervical cancer.

I have learned so much since you have been gone mom. I have learned about Henrietta Lacks, the different strands of HPV that cause cervical cancer, and how it is incredibly important to go to the gynecologist. And I have learned that sometimes bad things happen to good people. It is sad to admit this mom but your death has taught me just as much as your life.

Mom, I am faced with the cold fact that this year, you will have been out of my life for the same amount of time that you were in it.  I hope that you see that the world has changed and that I have changed. You always taught me to help other women and I have been doing that. I once met a girl who was in a job training program. I was doing a group counseling session with her and other young women. We talked about ultimate life goals. The girl had been quiet for most of the group. When it was her turn to say what, she wanted most in the world, she replied, “I just want to make my mother proud.” I touched her hand and I said, “Me too.”

I cannot see you, but the thought that you are smiling at me motivates me on my darkest days. It makes me want to talk to people about cervical cancer, organize communities, be a better mental health provider and be a servant of the Lord.  I do not know if you can really see me, but I have realized that I see you every time I do an act of kindness.

Hugs and kisses.

Your only daughter,

Lilly

Making the Most of a Recurrence

When you’ve heard the word recurrence as often as I have over the past five years, pausing life for cancer is not going to happen.

In 2011, I was diagnosed with Stage 1B cervical cancer. I underwent pre-surgery chemotherapy to shrink the 7 cm tumor on my cervix, a radical hysterectomy and because one cancerous lymph node was found during surgery, I had additional chemo treatments and 28 rounds of external pelvic radiation.

Ten months later my cancer recurred. A second surgery was needed — a pelvic exenteration. This surgery removed my bladder, colon and caused me to no longer have a ‘functioning’ vagina or rectum.

In 2013, I then heard the word metastasize when my cancer spread to my liver.

You know what word phrase I would prefer to hear? No evidence of disease (NED) or cancer-free. However, there is now a determination that comes with my recurrence. I am determined to keep moving forward.

My life goals have changed drastically. I am no longer motivated to climb the corporate ladder or amass great wealth or travel the world. I now strive to keep my inner joy and to always be present. This sounds simple enough, but with a recurrence, even the easy stuff can be challenging.

But I asked myself, how do I want to fill my days? Do I want to fill them with fear and anxiety? Or would I be happier focusing on the things that make me smile? I choose to surround myself with good, loving people who help me smile.

I’ve been back in chemotherapy several times and I even spent over a year NED. But I’m no stranger to cancer and chemo side effects, both physical and emotional. Some days are easier than others, but I’m kind of addicted to the sunrises and sunsets I take in each day, and I want more.

I have also found my advocacy voice and sharing my cancer story has become part of my life. Being able to reach someone, helps put my life in perspective. Today is more important then yesterday or tomorrow.

Follow Carol’s adventures on her blog, Cancer Avenger.