The Unseen Face of Cancer: Three Stories
June 21, 2018
A typical Wednesday car ride with my mother took an unexpected turn when she broke the news to me. Her best friend just found out she had breast cancer. My mother had tears in her eyes and knew that her friend would have to fight a difficult battle. Those tears in the car that day lasted throughout the journey of helping her friend fight an aggressive disease.
Her friend fought hard and thankfully is doing better now, but her experience and the effects it had on my mother sparked my interest behind the behind the scenes of battling cancer. Not just for the fighter, but the loved ones as well. I decided to gather different perspectives on battling cancer from three people at Charlotte Latin School. Talking to a breast cancer survivor herself and relatives of cancer fighters revealed the “unseen” face of cancer.
I began by speaking with Betsy Simerville, a Latin mother and assistant in The Nest, who was diagnosed with breast cancer in August of 2014. The fight took nearly a year, from August until May, during which she battled a double mastectomy, chemo and then radiation. What immediately surprised me was her reaction to the news.
“I was terrified. And then I was like, ‘I’ve got this’. I went into complete fight mode,” Simerville said.
However, her initial reaction to fight seemed to pale when when it came to telling her family. Her three sons, Will, grade seven; Jackson, grade five; Walker, grade one; her husband and her parents were understandably upset about the news.
“We kind of all cried together and said it’s not gonna be fun. I didn’t expect or realize how difficult this would be on my own parents,” Simerville said.
During the yearlong fight, life changed for Simerville and her family. As I would have expected, the treatments made it difficult for her to live her normal lifestyle.
“I couldn’t keep working because the daycare has germs. I would rest all day while my kids were at school and it was really important for me to up and with them,” Simerville said.
Not only was her day-to-day routine different but also her appearance began to change. I respect that Simerville did not feel the need to hide it.
“I bought a wig. My friends and I went to pick out a wig, and I looked like Carol Brady. I don’t like to be fake like that and it felt very fake. I’m such a talker and am about awareness, so I just wore a scarf. I wore my wig one time and I hated it and even my family said, ‘Mom, that doesn’t look like you’. It was better to me to just wear a scarf to cover up the bald head,” Simerville said.
I would have assumed that these life changes during the cancer treatment would make life much more difficult and stressful for the fighter, but not for Simerville.
“This is gonna sound crazy but it’s the truth. When you’re in it and fighting, nobody expects anything of you. If you’re up moving around, that’s good, so there wasn’t a lot of expectation. The only thing you have to do is focus on getting better. When you’re a mom and you’re used to focusing on a bunch of other things, it was kind of an easier time,” Simerville said.
Even though the cancer is in remission, Simerville continues to be affected by the disease. I never would have considered that part of the challenge of these later effects come from everyone expecting her to be exactly how she was prior to the diagnosis.
“I have had a much worse time since I’ve gotten better because everybody sees me as the same person I’ve always been, but today I have to go get a shot and take a pill every night that takes down all the estrogen in my body to keep it from coming back; it ages you a lot. To me, the later effects have been much harder,” Simerville said.
The distress of fighting the disease has led Simerville to fear its effects on her future.
“Now when I get sick, like strep throat or bronchitis, I get paranoid — what if this is cancer in my lung? It’s really been harder after the chemo. I worry about now, what did all of that do to my body? Am I going to die earlier because of what my body’s been through?” Simerville said.
This realization, that patients become sicker before they can get well, surprsises many people. I also didn’t realize that chemo gets worse as the treatment progresses. This is because in order to kill the bad cells, the chemo must also destroy the good, healthy cells. So, it gets harder before it gets easier, but Simerville fought through it.
“The chemo gets worse. The fifth and sixth were the two that I was really sick; the first few ones weren’t as bad. It depends, but for normal breast cancer, the chemo gets worse towards the end because your counts are down. Everything was like a victory round. After the first chemo, I made it through; after the next chemo, I made it through. I just broke it up,” Simerville said.
Along with her own mental and physical strength, I found it heartwarming to learn about all of her supporters helping her through the fight.
“When I was going through it, I was so connected to my faith. I just felt very lifted up by God the whole time. He gives you the strength when you need it. My family was awesome and my parents came and lived with me and took care of me after my surgery. And the Latin community was incredible, and the friends, and the food; it really taught me–send that card, take that meal, a sick person really notices,” Simerville said.
To my surprise, Simerville had a very positive take on the experience looking back.
“If I had to do it all over again, I would take that experience for the life lessons and the effect it had on my children and my family. It brought us together,” Simerville said.
Looking back on her experience, Simerville has good advice for others battling cancer.
“Take the help. Some people think they can do everything themselves, but if someone offers it, take it,” Simerville said.
Cancer is a disease that spreads beyond the physical body; a malignancy affects more than the patient who is diagnosed. Like my mother was there for her friend, all loved ones are part of the fight.
Nora Brooks, Charlotte Latin’s library assistant and summer program assistant, lost her father to prostate cancer and her sister to kidney cancer. These cancers surprised Brooks because they didn’t smoke or engage in any known risk behaviors. She also didn’t foresee the tragic outcome of her father’s cancer because in most cases, prostate cancer has a high cure rate. However, when she found out the severity of her father’s prostate cancer, it was a difficult realization.
“Because I was Daddy’s little girl and he had chased all the bad things in my life away and I couldn’t chase this away for him. My dad was a man of incredible faith and it became a real journey of God’s mercy and grace. He taught me how to change the oil in my car and he taught me how to die,” Brooks said.
I found it interesting that like Simerville, Brooks’s faith helped her fight through the experience and she used it as a source of strength, closure and hope.
“Faith, knowing that in the end he would be okay and that God would take Daddy where I could not, and that God would hold me up when I didn’t think that I could take another stand. I can’t talk about cancer without talking about God’s grace that I found in cancer because as His child, I don’t have to fear something that can only end my life here on earth because Daddy is more alive now than he ever was,” Brooks said.
Another help to her family that was inspiring to me was the hospice nurses that she commended.
“With Daddy, we had our first experience with hospice, and talk about angels. There is something special about a man or woman who can walk into that kind of medical care knowing that you are not going to make the patient well, but that you give them the dignity,” Brooks said.
These “angels” allowed Brooks’s father’s death to be a more peaceful experience.
“The way they phrased it, ‘it’s a struggle to be born and it’s a struggle to die.’ The body will do everything it can to keep going and that struggle is awful to witness because you can’t do anything. They told me how to administer the morphine; that’s weird to be giving your daddy morphine. We knew it was coming; that’s the amazing thing about hospice. The nurse said he had about an hour and a half at 11:30; Daddy died at 1:00. She nailed it. The nurses loved on us, and she let my sister and me watch him and get him ready for the funeral home. It was so peaceful, there were no machines, it was an amazing thing,” Brooks said.
After battling cancer with her father, Brooks then faced another fight with her sister Karen. But Karen’s battle was different. She was diagnosed with breast cancer in 1991, had a mastectomy in September of that year, did three more months of chemo and so by February, she completed her treatments. At just 21 years old, Karen survived breast cancer. However, 20 years later, in June of 2012, she was diagnosed with kidney cancer. After developing a cough, x-rays revealed cancer in her kidney, a very rare type called collecting duct carcinoma. There are only about 3,000 cases diagnosed a year. This time, Brooks knew they were in for a difficult battle.
“It’s generally always stage four when they find it. We knew from the get-go that we were in a bad battle. That affects you because attitude is so much in fighting cancer,” Brooks said.
Along with this difficult realization, it disheartened me to find out that the cancer came when Karen’s grandson was being born.
“You talk about going to the backyard and screaming with anger that this isn’t fair, that she’s not gonna get to see this little boy grow up. God and I wrestled hard on Karen. In the middle of Karen’s death, 18 months of that cancer, we found it necessary to separate from the church of our childhood,” Brooks said.
Looking back on her experience, Brooks had eye-opening advice not only for people battling cancer, but anyone in life, that was touching to me.
“Say things that need to be said. I wish that I had talked more with Daddy about ending things. I mean I was able to tell Daddy that he was my best friend and that he had always been my best friend. I told him what a privilege it was to tuck him in every night and how thankful I was that I was there to kiss him goodnight every night and hear him say, ‘Me too.’ But I wish I had said things like, ‘Daddy when you’re gone…’ but I felt like at the time that that might be a negative. But I wish I had said more things that needed to be said,” Brooks said.
I had never considered the quality versus quantity argument that Brooks brought up in relation to Karen’s very difficult final months.
“Karen took that second round of chemo knowing that it was going to be so debilitating because she wanted to be here for the birth of the baby. But I don’t know that that was fair for us to ask her to do that because her last six months were sitting in a chair; that’s not living. There is an argument for quality over quantity. I’m not an advocate of going faster than God wants you to go, but you do have to consider quality versus quantity so that you can enjoy telling your loved ones that you love them,” Brooks said.
I found it admirable that although Brooks fought through two burdensome battles, she had very positive insight about cancer looking back.
“Because of this awful thing that had happened to Karen, she was able to encourage so many people. I’m richer for having seen God work this way than if I had never gotten sick/never gotten to know God this way. Don’t wait for cancer. We spend so much time fussing over petty things that are just not worth our energy,” Brooks said.
After being inspired by Brooks, I talked to another daughter of a cancer fighter, Ellie Beuley ‘19. Her mother was diagnosed with breast cancer during the summer of 2017. However, a cancer diagnosis can be confusing and unclear, as Beuley soon learned.
“There was a lot of weirdness with her mammograms, like one came back as positive and as precaution you have to take another one and that came back negative. So they did another and that came back positive and then they tested it one more time and it came back negative. We had a lot of problems with doctors in Charlotte with telling us contradictory things so my mom actually went to a place in New York to get surgery and that’s how they figured it out that she had it,” Beuley said.
I didn’t realize that there can be so much lack of clarity from doctors but can understand how that would add stress to the battle.
“It’s a lot of just hurry up and wait. Like you have to immediately get this surgery to find out that but then get the results in 6-8 weeks so you’re like, why did we have to hurry up and do that if we’re just going to have to sit and wait? So we were all stressed,” Beuley said.
Beuley also opened my eyes to the lifestyle change that occurs having a parent diagnosed with cancer; especially for a teen.
“My mom is very energetic and always doing stuff and with the radiation and everything, she was just exhausted all the time. So, it was a lot of me doing stuff on my own which is fine, but I’m used to having my mommy help me but now it was different,” Beuley said.
I also discovered how watching a parent fight through this experience changes a child’s perception of and relationship with their parent.
“It brought us closer and we talked more about other stuff. We’ve always been very close but now I see her more as a person, like someone who can actually get really sick and be tired and hurt and in pain,” Beuley said.
I had never considered the idea of keeping such a predominant experience private; however, I found it honorable that Beuley chose to do so out of respect for her mother.
“I just thought if it ended up being a problem, I’ll handle it then, but I thought I could deal with it on my own. I didn’t want attention for something so negative and sad and it was my mom’s thing and not really my thing to share,” Beuley said.
Similar to Simerville’s and Brooks’s empowerment by faith, I was fascinated by the comfort that Beuley found in information about cancer.
“What helped me get through it was learning more. I did a lot of research and the more I knew, the more I was like, oh, with breast cancer there’s this amount of survivors and it will be fine, and the more I found out the more they diagnosed, and the more test results we got back I felt better about it,” Beuley said.
I was amazed by the improved outlook on life that can come from battling the disease.
“I put things into perspective and it showed what’s important, like people would complain about stuff and I just thought, well that’s stupid. The experience has taught me that there’s a lot of things that can go wrong, but there’s always a positive side. It made me look into things more and also made me think more about people. I was probably grumpy sometimes and so you never know what’s going on in someone else’s life,” Beuley said.
The fact that so many people want to help and support cancer fighters through their journeys is incredible to me. In honor of Beuley’s mother, the Latin cross country team ran in a breast cancer awareness race. Beuley is a dedicated member of the team.
“At first I was a little hesitant about the race because I don’t like attention, but I realized that this is a good thing that they’re trying to do and it’s for my mom. I think my mom and I both cried when they told us; it was great. People really cared and reached out and it showed that the cross country team is really always going to be there for you and who your friends are,” Beuley said.
Something that I had never thought about was life after cancer for the families. Now that Beuley’s mother is in better health, they are learning the “new normal” way of living.
“She finished her radiation treatments two months ago and now is taking a bunch of different medicines. Like we can’t fly really far because she can’t sit for a long time. It’s smaller things that we just don’t really think about. I know that she’s tired because there’s a lot of odd side effects like she doesn’t get that much sleep. It’s just the longer she goes with it the more normal it gets,” Beuley said.
Like my mother’s friend, all of these strong cancer fighters fought with loved ones by their sides. As Simerville, Brooks and Beuley all had their own experiences battling cancer with their families, they all used other sources to help them get through it and have positive reflections on their experiences. Although the struggle of cancer took a toll on all of them, they each gained from the fight. As Brooks put it, “don’t waste cancer, because there is life in the midst of the diagnosis.”