Phyllis

Phyllis D. Leopold 1938 - 2006
Robin’s tribute to her mother Phyllis

My Mother, Phyllis, was never one for preventive medicine. She didn’t go to doctors, she didn’t have annual physicals, and she didn’t have checkups. But at the same time, she wasn’t a picture of health. She had polio when she was six months old and underwent many surgeries as an infant. As an adult, after a long addiction to alcohol, she developed cirrhosis. My Mother was 66 years old when, in June 2005, she had to approach me, her then 27 year old daughter, about vaginal bleeding. She had recently become sexually active (after 24+ years of celibacy following the death of my father), and her mind was starting to piece together that perhaps there was something very wrong.

My Mother was unfamiliar with gynecologists, uneducated about STDs and I could tell she was uncomfortable having to discuss this with her daughter. I made an appointment for her with my own gynecologist. During their first appointment together (which to my surprise my Mother INSISTED I be present for), she told my Mother that just by visual examination, she knew she had to refer her to an oncologist.

That alone made my head spin. Oncologist? Cancer?

In August, I was sitting in the waiting room of Roosevelt Hospital. My mother was undergoing some tests and a biopsy.

The Doctor came out and told me he wanted to speak with my Mother, but she demanded he come get me first. I followed him into the room where my mother laid, half-drowsy, half-smiling when she saw me. I walked to stand by her side and she immediately grabbed my hand and squeezed it.

The Doctor started talking and to be honest, all I could remember were the words “your Mother has cervical cancer”. The moment I heard those words, I looked over at her. She squeezed my hand again. The Doctor went on further, but I can’t tell you what he said. I was still replaying the words “your Mother has cervical cancer” over and over again in my head.

The Doctor finally finished speaking and left my Mother and me to talk. The very first thing she said was that until we knew more, she wanted me to keep the information to myself.

When I found a moment to step out, I went outside of the building and called my boyfriend who was away visiting a friend in Maryland. The minute he said “hello”, I broke down. I’m sure nothing I managed to say through the tears was comprehensible but he just listened. When I was able to calm down and get the words out, I told him of my Mother’s diagnosis and about her request to keep the information to myself for the time being. I told him I couldn’t imagine not sharing this information with my family. I couldn’t bear to deal with it on my own. And considering my Mother’s age and previous medical history, I knew deep down that the road ahead was going to be long and rough and I wanted my family to come together and spend as much time as we all could with her. As soon as I hung up with my boyfriend, I called my sister. Maybe Mom would be mad, but I didn’t care.

As the days passed, I started to gather as much information as I could about cervical cancer. To be honest, until my Mother was given her diagnosis, I don’t know if I’d ever heard of cervical cancer. I knew about breast cancer, lung cancer, and colon cancer. But cervical cancer was unfamiliar to me. I needed to educate myself. What do we all do when we want information these days? We go online.

When I typed “cervical cancer” into the Google search engine, I saw the acronym HPV for the first time. Learning that a sexually transmitted disease could be the cause of my Mother’s cancer was hard to comprehend. Could my own father (who was no angel, believe me…) have given my Mother HPV almost 30 years ago? Was it this new man in her life? I didn’t have time to focus on the how and when. Now I just had to focus on my Mother, and focus on doing everything in my power to hold onto her.

By September, after countless tests, poking and prodding, my Mother was about to embark on her radiation therapy. Because of her weakened immune system due to cirrhosis, she wasn’t able to handle chemotherapy drugs, nor did the doctors believe she could make it through a hysterectomy. We’d also learned that her cervical cancer was in a very advanced stage. Radiation treatment 4 days a week, and a plan for implant radiation down the road were the only things available. My Mother’s biggest concern was whether she would lose her hair. The search for the perfect wig began. My biggest concern was how she would handle 4 days a week of radiation, treatment we had learned can be very draining on the patient. My Mother’s employer expected her to take a leave of absence. Instead, my Mother decided she could work up until an hour before her appointment. Her dedication to her job was unbelievable. I have two brothers and a sister. 4 siblings, 4 days a week of radiation. We devised a schedule and at each treatment, she had one of us with her. I think there were a few times when she even had two of us with her.

As she continued her radiation, we could all see how draining it was on her. And towards the end of the prescribed treatment, it was determined that she would not be able to handle the implant radiation or chemotherapy drugs. It was obvious that we had to start figuring out new ways to approach this.

By December, after she had completed 10 or 12 weeks of radiation treatment, her condition was rapidly worsening. She wasn’t eating, could barely get out of bed, and was in almost constant pain. But Christmas was approaching. My Mother’s favorite time of year. And even though she couldn’t do much, she somehow managed to get gifts for all of us.

I was on my way to her house on Christmas Eve. I called her to find out of she wanted me to bring anything to her. When she answered the phone, I could barely understand her words. I knew something was wrong. I hung up, and jumped in a cab. When I arrived, I used my key to get in because I knew she couldn’t get up to answer the door. I didn’t find it unusual that she was laying in the bed and that the lights were out. When I went over to the bed, she opened her eyes are tried to smile. I realized immediately that she’d had a stroke because of the paralysis on one side of her face. I called my brother and told him he needed to come over immediately because I was calling an ambulance (he planned to arrive later during the day). While I was waiting for the ambulance, I asked my Mom if she wanted me to give her the gift I got her for Christmas. The question seemed to puzzle her. And it seemed that I puzzled her. She didn’t know who I was.

When the ambulance arrived, my brother was right behind them. The EMTs were asking my Mother standard questions. Do you know who the President is? Do you know who the Mayor is? She gave answers that were right 30 years ago. But when the EMTs pointed to me, she still didn’t know who I was.

When we arrived at the hospital, after they had stabilized her, they again asked questions. This time she managed to say “Robin” when they pointed to me asking her who I was, and “Ricky” when they pointed to my brother. Within an hour, it was as if the morning hadn’t happened. She wanted a can of coke, she wanted me to scratch her back. This was the Mom I knew.

The doctors confirmed that my Mother had suffered a small stroke and wanted to keep her in the hospital until she was stronger and more stable. I spent New Years Eve with my mother in a hospital room. Not exactly ‘party central’, but I couldn’t imagine being anywhere else.

January and February were very taxing months for my Mother and for our family. We placed her in an adult care facility a block away from her home, so that she would get the care she desperately needed, but be close enough to enjoy visits with her friends in her building.

My mother made the decision (against all of her family’s and friends wishes) to sign herself out of the facility. She wanted to be home. It so happened that the Visiting Nurse Service had an office in her building, knew her because she worked at the front desk of her building, and they were very eager to help me secure home health care for her.

Two home health care aides later, we couldn’t afford the care any longer. My mother didn’t particularly mind (she was never too keen on a stranger being so intimately involved in her day to day activities). Fortunately, there was a man who lived in her building who was very fond of my Mother. He knew the circumstances and the situation, and since he was retired and spent his days at home, he offered to take the place of the home health aides and do whatever he could to help my Mother. She was grateful, my family was grateful, and finally we could concentrate on being with her, rather than scurrying to get care for her.

In the first few days of March, my Mother’s health declined dramatically. My family knew that the end was near. And more importantly, so did my Mother. I arrived at her apartment one morning and found her lying in bed. Her breathing was becoming more labored by the minute. When I sat beside her on the bed and told her I thought we needed to go to the hospital right away, she managed to whisper “I know”. At the hospital we learned that during the time she had become confined to a bed, she developed pulmonary embolisms in both her lungs. The Doctors told us to prepare for the inevitable.

As my family and our friends held vigil in the hospital, my Mother had the chance to spend time with many of her friends. Because of the lack of oxygen to her brain, there were times she was confused, delusional, or unaware of what was going on, but she always managed to keep a smile on her face. Some of the bigger smiles were for her granddaughter Annabelle, who spent many hours at the hospital with her Grandma, and drew pictures that she brought to every visit to help decorate the hospital room. On March 8, her employer and friend, Laura, who i also a Reverend, spent the evening in the hospital with her. I wanted to leave them alone, so I went home to shower and get some rest. At around midnight that evening, Laura called me to tell me she’d just arrived home from her visit with my Mother. She told me that she left her resting comfortably. She also told me that they chatted for quite some time and the final thing my Mother told her was “I’m ready to go home to God”.

I had a lot of trouble sleeping that night. I knew my Mother had given up the fight. I just wanted to make sure I had a chance to say Goodbye to her.

At 7:30am on March 9, 2006 I walked into the hospital. By 9am my sister Lisa was with me. Even though our Mother hadn’t eaten in days, we bought her favorite breakfast, egg whites on whole wheat toast and fresh squeezed orange juice. I think she ate a bite to appease us. As the day went on, more family and friends arrived. My Mother’s words became less intelligible, less audible. When the Doctors came in to discuss a DNR order with my sister and me, the reality sunk in heavier than before. We knew our Mother’s wishes – she was ready to go home to God. After we signed the DNR order, we stayed at our Mother’s bedside. Lisa played with my Mother’s hair as she spoke some of the last words our Mother would hear. She told my Mother “You are a really good Mom”. Mom responded “I know”. For a few more hours, as Mom drifted in and out of sleep, we talked to her, kissed her forehead, rubbed her feet, prayed with her.

At around 1am on March 10, 2006, surrounded by her children, our Mother took her last breath. She was no longer in pain, there was no more suffering. She was home with God.

Since then, it hasn’t been easy. I came across Tamika & Friends, Inc;’s website a little over a year after my Mom passed away because I had done a search on google and their site came up. I can't tell you what I searched for, but either way, finding that website was a God-send.

As I browsed their website, I noticed they had just held a walk in Washington, D.C. (the organization is based in DC/MD), so I reached out to them via email, told them of the loss of my Mother, and inquired whether they were planning a walk in NYC. Lo and behold, I received a response directly from Tamika. She told me that indeed she HAD contemplated the idea. We communicated for a while by email and in October of 2007 Tamika invited me and my best friend Jillian to a Girlfriend's Retreat in Washington, D.C. Seeing the work of the organization first hand, I realized that this was something I wanted to be a part of. And I think it's also something I am meant to be a part of. I think in some divine way, my Mother guided me to their website, to their organization, to their mission.

By 2008 , I was on the Board of Tamika and Friends, Inc. and I was also the Walk Chair for their successful first NYC Walk to Beat The Clock which was held on September 13, 2008 to raise awareness about cervical health and the tools that women have which can prevent this disease: pap tests, HPV testing, and HPV vaccines.

Within only 7 months from diagnosis, cervical cancer took the life of my Mother. I knew nothing about the disease, or its link to HPV. I didn’t know that cervical cancer is almost always 100% preventable. I didn’t know. My family didn’t know. My Mother didn’t know.

But now we do know. And now it’s time for education, awareness, and most importantly, prevention. Since the passing of my Mother, my teenage nieces have all been vaccinated against HPV – our family refuses to lose another beautiful woman to Cervical Cancer. I have encouraged every girl and young woman I know to get vaccinated if they are within the age range, 9-26 years old, or to ask their Doctor for the HPV test along with their PAP. We have this tool that we know prevents the 4 types of HPV that lead to Cervical Cancer and we have the knowledge to eradicate Cervical Cancer.