The rainbow after the storm
November 22, 2017 | Nevette Tyus-Middleton
I have been through a storm. And I don’t just mean any storm. I mean a tsunami.
A tsunami generally consists of a series of waves with periods ranging from minutes to hours occurring in a so-called wave train. That’s what having ovarian cancer felt like to me. It was waves of different emotions, waves of different treatments—surgery then chemo—waves of days of depression, waves of days that my pain seemed to have no end.
During treatment I spent most of my time in my bedroom. Not knowing whether I would live or die, wondering why me, wondering what had caused this. What about those fertility treatments? Could that have increased my cancer risk? Could it have been a defective gene? After all, I did test positive for the BRCA1 gene mutation, a definite risk factor. Those of us who are BRCA- positive have no idea when these cells may decide to go rogue. It’s like having a ticking time bomb inside with a cell phone detonator. One day you get a call and your world explodes.
In 2011, I had begun to experience pain in my lower left quadrant during my monthly cycles. Of course, many women experience pain during this time, as I had many times before. Only this particular time the pain was different, sharper, and more intense. The same thing occurred month after month. I decided it was time to see my OB-GYN. She ordered an ultrasound, which revealed a mass on my left ovary. I was not surprised because I had a cyst on my ovary before which she had removed, but it was benign. No cause for alarm or so I thought. I did not see the storm on the horizon.
This time, my OB/GYN referred me to a pelvic specialist. I went for a consultation, and she ran more tests. We decided to move forward with surgery. I went in for what I thought was a simple ovarian cyst removal. I thought I would have my cyst removed and be off and continuing my happy little life.
During the procedure, my surgeon sent my cyst for review by a pathologist. The report came back positive for papillary serous adenocarcinoma of the ovary. Well, this changed everything. While I was still in the operating room, my surgeon had an extensive conversation with my husband and mother about the pathology results. This meant my simple cyst removal was no longer simple.
My surgeon wanted to do a complete hysterectomy and cancer staging immediately. My husband was not sure that was the best course of action. He and I did not discuss this possibility prior to surgery. I really had not allowed my mind to go there. We were so hoping to still conceive some day. He knew what this meant to me, to us. He knew that this was going to be devastating news.
I woke up in recovery to voices; the medical staff and my family were around my bed. I still felt a little groggy from anesthesia. The doctor shared with me the most dreaded news I ever heard: “You have cancer.”
Tears began to stream down my face and my mind went to a place it had never gone before. Cancer was real, and it was inside of me. It was very hard to comprehend. It was like I went to another dimension of space and time. “No, not me, they must have me confused with someone else.” I ate healthy. I exercised. I wasn’t overweight. All these things I thought I was doing right did not help me escape cancer.
Thank goodness I had my family to lean on. My husband, Jerry, and my mother, Lunnie, were my cheering squad, my biggest advocates and my caregivers. My mother quit her job and moved in with us to help take care of me so that my husband could continue to work and not worry about leaving me alone. She was definitely a godsend.
In the following weeks, I was scheduled to see my new gynecological oncologist, Dr. Dineo Khabele at Vanderbilt-Ingram Cancer Center. When I arrived at her office, my thoughts were all over the place. She came in, introduced herself, and then began telling me my diagnosis and plan for treatment. She was very thorough.
First was my staging surgery on Dec. 5, 2011. I remember that morning like it was yesterday. We got in the car, and nobody was saying a word. I decided to turn on the radio. The song “I Speak Life” by Donald Lawrence was playing. Those lyrics just resonated within me. Tears began to flow, but this time they were happy tears. I felt like that song was meant just for me and the surgery was going to be just fine.
It was a very extensive surgical procedure, and I knew that my very life depended on the findings and the success of this surgery. Afterwards, Dr. Khabele came to us with good and bad news. The good news was the surgery went well. She was able to complete the total abdominal hysterectomy (TAH), bilateral salpingo-oopherectomy (BSO) ovarian staging, tumor debulking, lymph node dissection and intra-peritoneal (IP) port placement. The bad news was the cancer had spread.
I was diagnosed with stage 3C MMMT of the ovary, normally pronounced Triple MT. MMMT is rare (less than 2 percent of all ovarian cancers), aggressive, rapidly growing and normally found in late stages.
After surgery I went home to prepare myself mentally and physically for chemotherapy. Unfortunately, I developed an infection and had to be hospitalized beginning Christmas Eve. I was hospitalized for a little over a week. I missed Christmas. I was released and returned again a few days later with other complications. So there went New Year’s. Cancer does not take a break for holidays.
Finally, I was strong enough for treatment. My plan included six rounds of chemotherapy with Taxol and Carboplatin administered every 21 days. My doctor decided to take extra precautions and admit me for my first chemotherapy treatment. I was so anxious and nervous. I asked for Ativan. I knew from the moment they gave me the preliminary drugs that something was wrong. I started to feel strange. The chemotherapy was started late in the evening between 9 and 10 p.m. During the course of the night my heart rate dropped and a code blue was called. I am so thankful for the patient tech who checked on me so diligently. He was my angel in disguise. He notified the nursing staff when my vitals became very low. The appropriate staff was called. Thank God I survived the night.
Since the first treatment went awry, we decided it was best to admit me for the second treatment too. This one went much better. After my first two treatments, I was able to have the remainder of my treatments as an outpatient at the Vanderbilt Infusion Clinic.
After taking a few chemo treatments, my body started going through all these changes. I lost all my hair, felt nauseous most of the time and lost about 25 pounds. I looked different, I felt different and my self-confidence was nonexistent. I no longer recognized the person looking back at me in the mirror. Cancer takes and takes and takes. Its sole purpose is to destroy everything around it. It survives by taking from you, I prayed “Lord, please don’t let it take my life.”
As I continued my chemo treatments, the drugs began to affect my eyesight. I was no longer able to read my Bible or affirmations, and I was no longer able to watch TV. The few comforts of being in bed all day were gone. Now, I was left alone with my thoughts. On my darkest day, in my darkest hour, when I wanted to give up, my faith kept me going. My mother would come into my room and put oil on me and pray. Sometimes it would be the only thing that brought me any peace.
Although things seemed bleak, giving up was never an option. The day had come for my final treatment. YEAH! It was like the grass was a little greener and sky was a little bluer that day. I was finally done with chemo.
A few weeks later I went in for scans and met with my oncologist. She stated there was no evidence of disease. Hallelujah! I could hardly contain my excitement.
As the months progressed, I began to regain remnants of my old self. I began to reflect on my journey. During my illness at times I felt very isolated. I never want anyone to feel like they have to fight this battle alone. I created a prayer line for family and friends. We get together every Saturday morning. There is power in prayer. The prayer line is five years strong and so am I. Now I am a cancer advocate sharing a message of survivorship and hope. I want people to know cancer is no longer a death sentence but a life sentence for change.
I would like to share my five biggest lessons learned. Some you may have heard before or maybe not. (1) I believe everything in life has a purpose, big or small. (2) Every day is a gift; use it wisely. (3) My battle with cancer gave me greater faith. It let me know God is with me always. (4) Family relationships are crucial to recovery. I would not be here without them. (5) After every storm, it’s up to you to find the rainbow.