This summer, I had an appointment at my hospital. I had a negative interaction with a medical provider. It was not the worst in the world; it was not the best either. Initially, I decided not to share my feedback with the hospital, but I later opted to call and share my experience with its staff. My intention was to take a developmental approach to the situation. As the environment of this country has evolved in the past couple months, I felt responsible for doing what I can to make it better. The following is a statement I wrote as part of my application for the hospital’s advisory council for patients and families.
I didn’t sleep well last night. Today I will start a new segment of treatment for breast cancer, and I feel emotional about how my body, spirit, and mind will respond to treatment. I’m crying as I write this because I’m both nervous of the effects and also grateful to have access to healthcare. With that said, RACISM IS WORSE THAN CANCER. In the past few days, racism has caused me more sorrow than cancer.
When I found out I had cancer, nobody asked me what I did wrong or how bad the cancer was before showing me compassion and wanting justice in my healthcare. When someone experiences racism, there is always someone who needs to evaluate how bad the situation is before determining if the victim is “worthy” of compassion and justice.
When I was a sophomore in college, I took a social issues theatre class. I was the youngest person in it. Everyone else was a junior or senior. A couple of them were even nontraditional students (in this context, adult learners), and one of them already had a kid. That wasn’t a norm at my Big Ten school, where students ages 18-22 were the standard for undergrads.
It was an intimate class. There were less than 10 of us, and that was atypical for a public university with tens of thousands of students. I liked it because I got to know everyone by name. Given the themes of the course and the class size itself, we were able to engage in profound discussions that I didn’t normally have in lectures with hundreds of classmates.
One of the people I got to know in the social issues theatre course was Lawrence Haynes. I performed in one of the plays he wrote for class. Generally, I found him to be a warm, welcoming, and introspective person. He was kind to everyone.
He graduated the same year we took social issues theatre together, but we stayed connected through Facebook, which was relatively new at the time.
Yesterday morning, I went on Facebook to post in a support group for young breast cancer patients and survivors. I got connected to this group Young Survival Coalition at the recommendation of another survivor shortly after I was diagnosed. After reading the website, I signed up for their Facebook group as soon as I realized they had one.
Since I joined the online group, I’ve mostly read other people’s stories, comments, questions, fears, and victories in their battles with breast cancer. Sometimes their fears have amplified mine, but their hopes also have given me hope when mine felt low.
As a newbie to breast cancer, I got to learn about terminology, resources, and other issues that I otherwise wouldn’t have known had I not joined that online group. More knowledge can be both disconcerting and comforting; therefore, I have to be very mindful of how I interact with the page. Overall though I find the benefits to outweigh any discomfort I feel from reading patients’ and survivors’ challenges and fears. We all need an outlet to share our unfiltered thoughts, and that forum serves that purpose.
This online support group for young breast cancer survivors is the opposite of content that I find highly annoying online, and that content is inspiration porn.
I haven’t written here in two weeks. In case you were wondering why, it’s because I got a mastectomy a couple days after my last post. I’ve been adjusting and readjusting to my new body.
If you regularly meditate or do yoga, you’re likely familiar with the concept of the mind-body connection. Well, my mind-body connection is so thrown off. My mind and body are confused. This week, a social worker at my hospital told me that this feeling is normal. She said my mind and body are working to reintegrate their connection to each other.
Prior to my mastectomy, I was so scared of how I would feel when I woke up without one breast after the operation.
After my operation, I woke up with a nurse beside my bed in the recovery room. After a few minutes (or what seemed like a few minutes) of her asking me how I felt, another woman pulled open the curtain around my bed and walked in. This new woman introduced herself as a chaplain of the hospital.
“You’re Regina?” I asked. Yes, she was surprised that I knew her name. I explained that another chaplain had referred me to her and told me to expect a visit after surgery.
Regina asked how I was, and unexpectedly I had a lot to say. My throat hurt from whatever tubes the doctors had put down my throat, but I recall a lot of word vomit. Since it was my first time meeting Regina, I recounted the events of my discovering the lump in my breast, steps I took in my medical care, and the shock I was feeling post-operation. I was surprised how much I had to say. I was feeling light-headed and/or dizzy from anesthetics and medication (and continued to feel that way over the next couple days), but that didn’t stop me from being talkative. I think I was word vomiting because I needed some way of immediately processing everything.
More than a month and a half after I received my breast cancer diagnosis, I attended a support group for women who had all types of cancer. During the latter part of the session, a breast cancer survivor introduced herself and wanted to find out what brought me to the group. After learning that I was newly diagnosed with breast cancer, she gave me her contact information and offered to talk to me further about resources.
Within a few days, I emailed her, and we were able to talk on the phone a day later. She shared her story with me, outlined the challenges she faced, and provided advice for my next steps.
“Get a Keurig, ” she told me. I almost told her that I was a tea drinker, but I was intrigued by her specific recommendation. I asked her why she suggested a Keurig. Then she explained that people could serve themselves when they visited me. I wouldn’t have to worry about serving them.
Something about her recommendation sat with me in a funny way. I couldn’t put my finger on why. Then it occurred to me how much she had thought about serving other people when she had been the one in dire need during her recovery.