MY JOURNEY TO SURVIVE STAGE 3 BREAST CANCER
I have spent the last thirty years of my life telling the stories of my people. It is not only my profession but my moral obligation to be a voice for the voiceless. The truth is, I have been so busy telling the important stories of others, that I have never told my own. This is my first time sharing my long journey to discover, fight and win my battle against Stage 3 Triple Negative Breast Cancer. This is my story. This is my song.
My journey began in late April, 2015 when I found a lump the size of a quarter in my left breast. I was shocked because due to a long family history of breast cancer, I did self-exams almost weekly. I was more alarmed by the size of this mass than finding it. It was not my first time finding a mass, but this was different. In years past, I had two cysts removed from my right breast, but I knew this was not a cyst.
I had just relocated to northern Virginia and had not found new doctors in the area. I immediately went to a gynecologist referred to me by a friend so that he could examine me and write a referral for a mammogram. I explained to him that I received my annual mammogram in December, 2014. The results from Piedmont Breast Center had come back negative but 6 months later, I knew that something was wrong. I told my new doctor about my sister who was losing her battle with breast cancer after four years. I also told him about losing my beloved niece to breast cancer in 2007 and numerous cousins. His concern grew as I told him my family history. He immediately sent me to get a second mammogram.
When I went for the mammogram at the Association of Alexandria Radiologist, the radiologist told me my mammogram only showed dense tissue. I told her that I didn’t feel comfortable with the results because the lump was too hard and I could almost move it with my finger. The results and the term “dense tissue” did not calm my spirit. She offered me a 3-D mammogram -which by the way - should never be trusted. After voicing my concern the radiologist offered me an ultrasound and it came back with the same results. To my surprise the radiologist was insulted that I did not accept my results. She told me the details of the ultrasound would be sent to my doctor but I was free to speak to her boss. Let’s be clear, no one wants cancer, but I knew my body. I knew that something was wrong. The radiologist’s boss explained my results again and then she sent me home to die.
When I received a copy of the letter they sent to my referring doctor, I called him to ask if I could schedule another appointment. The next week I was sitting in his office and he examined me again. He said “Listen, you are so adamant about this. I tell you what I am going to do. Dr. David Weintritt is one of the best breast specialists in Northern Virginia maybe in the country. Let me see if he can fit you in.” Finally, someone was listening!
After a month of going back and forth, I made it to Dr. Weintritt. His staff treated me with compassion and so did Dr. Weintritt. I told him about my sister and I told him that I felt I had cancer too. During the sonogram he said,”I can do your biopsy one day this week but if you have time, I will do it now.”
I looked at the screen he was watching and I could see the lump that looked like a slash of water. It was not what Dr. Weintritt said; it was the look on his face that made me say “yes” to do the procedure at that very moment. It was a look of a good doctor not willing to miss a chance to save a life. He had seen that image before. He did the biopsy and told me he would call me as soon as he received the results.
I went home and said nothing to my friends or family. My family was in crisis with my dear sister and I wanted details before alarming anyone. I traveled to see my sister while I waited for the results and tried to focus on work as much as I could when I returned home.
During this time, I was recording Dick Gregory almost daily for a new book. A few days after my biopsy he cut me off while we were working via telephone. “What’s that in your voice? It sounds like fear.” I turned the recorder off and told him what was happening.
“Okay, well we have work to do. There is nothing to talk about until we get the results. Whatever it is, you believe in God and I will help you.” He said in a calm voice. From that day until he died two years later, he filled my head with knowledge about nutrition, natural/alternative medicines and remedies that I believe helped to save my life.
The following Monday, Dr. Weintritt called and asked me to come into his office. I said “NO, I don’t have to come in. Just tell me what we have to do to make sure my mother does not lose two daughters.” He confirmed that I indeed had cancer and then he said. “You have diagnosed yourself, Shelia! I know this is hard but good job! Now let’s get to work on beating this.” He transferred me back to his assistant for my next appointment and the fight was on.
I still did not say a word to my family because our crisis had become a nightmare as my sister’s time drew near. I needed a plan of action before giving them more bad news. I called my sister-friends in Atlanta, and they went into prayer mode. My new neighbors started showing up with hugs, cards and flowers. Another friend who is an author and a breast cancer survivor started talking to me about her journey and filled my heart with hope.
I also called Dick and gave him the news. “Okay”, he said. ”So, we have to not only get this cancer out of you... we have to make sure it never comes back. First, don’t ever say... “God, please help me.” You don’t have to beg God. You have to go into thanksgiving. Repeat after me.” He said. “God, thank you for healing my body.” I repeated what he said and that is still my prayer 6 years later. After that, he gave me a list of people around the country to call. I called his friends who were holistic doctors, nutritionist and prayer warriors who told me what to do and when to do it. None of them told me not to follow the doctors’ orders. I combined my modern doctors’ instructions with the holistic doctors’ suggestions and I prayed daily.
The next week I was sitting in my new oncologist’s office. “So, I heard you diagnosed yourself.” He greeted me with a smile, but I could tell he was really concerned because of my family’s history and he wasn’t taking any chances. His office set up my PET scan and chemotherapy protocol as I adjusted to the word cancer. That’s what it is... a huge adjustment. Nothing is the same. I went from never having spent a night in the hospital to a deadly disease.
A few days before I started chemo, I broke the news to my relatives as my sister‘s days drew shorter. One of the holistic doctors gave me some harsh but good advice that same day. He said “You cannot focus on the grief that is coming. You must focus on life. You will not make it if you cave now.” I needed his wisdom when my sister joined our ancestors. Instead of crying, I walked into the bathroom and looked in the mirror. Most of my hair was on my head, but I realized it was not attached to my scalp. It had fallen off during the night. “I will be damned if I am going to lose my sister and my hair on the same day!”, I said out loud. I filled the trash can with hair and wrapped what was left under my scarf. I wore hats until after the funeral and tried not to think about what would happen next.
After the service, I drove back home to face another day on the battlefield. When I pulled the scarf off, the little hair that I had left came off with it. I can still feel the deep breath I took. I walked to the riverfront in my neighborhood and said a prayer. I called on my ancestors and then I walked back home and prepared for another round of chemo the next morning. I also called the holistic doctor in St. Louis. He listened as I told him about my hair. “You have chemo in the morning. Forget about your hair. Being bald will not kill you. The cancer will.” That sounded harsh too but it was true.
The next three months were filled with more appointments, throwing up and preparing for a double mastectomy. My oncologist was like a coach as he stayed focus on my health until my last chemo treatment on October 8, 2015. After chemo you have to wait a month before surgery and that month gave me a chance to feel whole again. After monitoring me for 30 days, my oncologist put me back in the hands of Dr. Weintritt who had helped me add my plastic surgeon, Dr. Ali Al-Attar to the team. Just keeping up with notes, new medical terms, and numerous doctors was a part time job as they helped me prepare for my double mastectomy.
Cancer was so lonely, but my prayer of thanksgiving kept me encouraged. I believed my prayer. The darkness was the human side of me but never the spiritual being.
On November 18, 2015 my sister,Jackie; brother, Leon and sister- in - law , Iris gathered with me at the hospital for my double mastectomy. Dr. Weintritt and Dr. Al-Attar both came in to assure me that they were a team and that I was going to be okay. Three hours later I was a breastless woman, but still a woman. After Dr. Weintritt removed both breasts, Dr. Al-Attar came in and began the 2-hour procedure to place the expanders in the wall of my breast so that I could receive implants later.
When I was released from the hospital I went to Jackie’s house for a week and then I returned to my home. Recovery was not easy, but I was determined to not only live but to be whole again. I had to wait another month to start radiation and I knew it would be another marathon. What I did not know until January of 2016, was that radiation would be harder for me than chemo. For thirty days, I drove to INova Hospital at 6:30 a.m. for a treatment that took less time than it did to get undressed. I was tired most of the time and emotionally drained. The radiation started to make my left expander hard and my skin dark. My arm was in constant pain and it hurt to drive, cook and clean. Most of all it hurt to write. My first thoughts were, “God,I have to help my siblings with Mama. I need my arms to stay strong. God, I am a writer. I need my arms to stay strong so my life as an author is not over. I know you will not leave me now so I thank you for my healing.”
A week later I was diagnosed with lymphedema and began physical therapy. I called Dick and told him what was happening with my arm. He paused for a minute and then he said. “Don’t stop going to physical therapy but throw away the cream they gave you. Go to WholeFoods and pick up some Egyptian Magic. I need you to use it for the rest of your life.” That was the only time he told me to go against the doctor’s orders. I did what he told me and it worked. The Egyptian Magic began to soften my skin within weeks and I have not seen a doctor for my lymphedema in 5 years. For that I am grateful.
After radiation was over, I began my quarterly visits to my oncologist, surgeon and breast specialist. Since 2015 I have had 5 surgeries related to my reconstruction surgery, one infection and a hysterectomy. There is no medicine which prevents Triple Negative Breast Cancer from reoccurring so the first few years felt like a game of Russian Roulette. Over time I stopped holding my breath before every test or waiting for results. My prayer has not changed. “Thank you for healing me, God.”
In between surgeries, I spent time with Mama and remained my creative self. Being creative kept me from thinking about my health all the time. I wrote a novel and a play. I also curated an exhibit, taught students to write and became an author in residence at two Georgia schools at the invitation of Dr. Jewel Faison.
Of course, God revealed the good and bad to me while I was in the valley. I fired my agent who basically gave one of my major project ideas to another client while I was going through chemotherapy. In my Tabitha Brown voice, “God, I thank you.” The gift of her betrayal made me realize that I was my best agent with my health and professional life. Without my agent, doors opened and I came up with new ideas because that is the gift my God gave me.
As time passed, I continued to use my time wisely because I knew I had one more river to cross. I was facing one more surgery to correct the implant that had become infected and removed the year before. Oh’ I forgot that part! My first implant became infected so I had to have it removed and start the process over again!
In September of 2020, in the midst of a pandemic, it was time for what I believe is my last surgery. They were not allowing anyone in the hospitals, but my sister-friend, Sandy, drove to the hospital and sat outside as the rain poured down on her car. Once I was in recovery, another friend, Beverly, picked me up and drove me home. I could not hug them or let them come up to fix me a cup of tea. I feared and my doctors feared another infection and Covid 19! I went home alone and thanked God for my healing!
Since that time, I have lived free from surgeries and pain. Covid-19 created a new risk for cancer survivors as we deal with the fact that we are high risk, but again, I have to soldier on. The pandemic also slowed my once fast life down more than the cancer did, but I don’t complain. I am grateful to be alive and in the voice of my mother, “I am glad to be in the number.”
So last year, during Breast Cancer Awareness Month, I decided to tell my story. I hope that it will help someone who is losing hope. So many things will happen to you during your breast cancer battle. I know because so many things happened to me. In addition to losing my beloved sister, Dick Gregory died in 2017 and my big brother, Daniel is still missing. The fight to find him has never changed. Bringing him home one day is a part of my will to live. The greatest loss came when my mother died in 2020. She was strong and a no-nonsense person. Instead of falling apart, I try to keep her greatest gift to me intact. The gift of survival! The gift of never giving up!
November 18th marked the 6th anniversary of being cancer free. It also marks the day that I learned that to be a woman is neither my breast nor my hair. I learned the definition of celebrating the big and the small things. I want to encourage you all to do the same and we walk into 2022. It may not be cancer but we are all surviving something! Say the prayer of thanksgiving. Surround yourself with people who love you. Some of them will disappoint you, but so goes the storms of life. When the storm is raging, God will calm the waves! There will be days that the sun is totally bright. There are also days you feel you are walking in the dark. Just keeping walking.