I will not leave my bed this morning. Unshowered and in my PJs, I lay. My body is too heavy—laden with pain and sorrow. These later years are so different in my cancer journey than my earlier years. My cancer stayed, but in 15 years, the support has faded. As my cancer grows and takes over, its well-to-do friend, loneliness, has a more prominent presence. Just writing this down makes it even more real. Yet I try and keep fighting. There has got to be a reason why I am here.
Now, I have aged, and my body is breaking down. Cancer reminds me of who is in charge. “Lay down!” she commands, and I cry. Warm, salty tears stream down my face, dampening my pillow. I take a deep belly breath to try and center myself. The traffic outside is loud; cars and trucks are speeding past, the city bus blaring its horn. In the distance, sirens blare, and I say a little prayer, hoping everyone is OK. Feelings of despair overcome me. I am in the middle of a busy city, and my heart is bursting with loneliness and isolation. I, Michelle, am a prisoner in my home, but I must try and rest.
How did I get here? It wasn’t like this when I was first diagnosed with cancer. I was free and could do as I pleased. Outings, family gatherings, and visits with friends filled my calendar. I was more vital—a fighter. Worn down and tired. Time passed, I aged, and the cancer grew. I’ve slowed down, and I am no longer employed. Outings and visits are now a treat. Now, I am a prisoner in my own body and home. Let me introduce you to my warden, my keeper. Her name is Cancer, and she is a strict warden with many rules to follow. Cancer can give you hope but also fill you with despair; it is a tricky relationship to manage. She prefers things her way, or she becomes cranky and mad. Sometimes, she even changes her mind and forgets to tell me. Then, she starts to act out and cause me even more discomfort. Pain shoots through my body like lightning. I yell out in pain, begging her to stop. Cancer is my keeper; my body has become my prison. I bury my head in the pillow and mumble, “What crime did I commit?”
Confined in my body are my mind, heart, and soul, all prisoners fighting for the same energy. They all want a say in what to do each day. My heart and soul want to go out and help others and fill this Earth with love. My mind wants to solve problems and be creative. I can’t do everything at once anymore, so I must choose carefully. Energy is a nonrenewable resource. Today is no different. This morning, I missed another nephew’s soccer game because of too much pain, thanks to Cancer, but I did shower. I am not well, or I am in too much pain, or I am too tired, and I miss out; it’s become a long-standing pattern.
“Stand down; you are not in control. I will tell you where you can go.” She yells, reminding me constantly who is in control. I missed my niece’s ballet premiere and another birthday party. Instead, I am sitting at home, resting and in pain. I can’t help but wonder, do my friends and family miss me as much as I miss them? Do they look at each other and say, “I wish Michelle were here.” Tears stream down my face as I tally all the missed family events. My heart is bursting with anger and frustration while crying out for help. How can I change this? What can I do?
I crave hiking with friends, climbing challenging trails, and basking in Mother Nature. My heart desires more outings and laughter. I miss out on the inside jokes, the stories, and family time. Loneliness prevails as I sit at home, a prisoner. Surrounded by complete silence, I try to find solace, but my mind won’t be quiet. My warden is always with me, so I must remember the rules. “Be quiet, be grateful, and don’t complain, or I will give you something to complain about,” is my warden’s motto. Those are the rules I live by. I wear a mask and hide my despair from others. I keep silent about my pain. I fight daily to get out of bed and engage in life. My face aches and is full of sores; I am tired of always wearing a mask, pretending everything is OK. My body is slowly dying. I am bearing witness to my death. “I am not done yet!” I yell at the universe, but my capabilities become disabilities over time. I am angry again. Or still.
Cancer chose me; I don’t know what my crime is. My doctors don’t know, and I may never know. Cancer is excellent for generating questions that don’t have answers; it’s definitely one of her skills. On days like this, I have so many questions. It may be quiet in my home but loud in my mind. Constant talking back and forth between pre-cancer Michelle and post-cancer Michelle. Some conversations I avoid altogether. Admittedly, I will put on the mask before looking in the mirror. The phone has not rung, and there are no text messages either; maybe people have forgotten me. Everyone is so busy. The invitations have stopped coming, there are fewer visits, and I feel left behind. I can do some things; let’s do those things together, but folks are too busy.
During my incarceration, I have found it challenging to cultivate new relationships; you never know what rules the warden will impose. Curfews constantly change, along with whether eating, going out, and engaging will be OK. It also depends on rest and how charged your battery is. We all have a battery; it’s how we run. Somedays, I am fully charged and ready to go, while other days, I am in the red zone. Cancer is not a kind and caring warden. Gone are the clubbing days when I could stay up all night; now, I like shopping but need a “smart cart” to engage. I will gladly race you around the store. A dinner date with me means we eat at 5 pm, aiming for those early bird specials. I am so grateful for those dinners. Feel free to give me a call.
I wish people would hang out with me more, maybe watch a movie. I have Netflix and YouTube TV, and I will rent anything you please; it can be short, but I want to do fun stuff together. A text or a call means so much; I am tired of feeling this way. It takes some negotiating with the warden; Cancer will clarify what we can do that day; ask. I have reached out repeatedly, so much that I am worried about being a burden. So, I sit and wait. I don’t know what is more brutal, the silence or the pain.
As the days meld into one another, I cannot tell what day it is. Cancer can do that sometimes. As time progresses, I become sadder, and depression starts knocking at the door. My warden is good at her job. She keeps me isolated from everyone else. She is cutting me off, gaslighting me from friends and family. I know this but don’t know what to do. I need help. Help me, please. Remember, I am a person, too; I am not just cancer. I am creative, funny in a snarky way, have a great sense of humor, and love to read and watch horror movies. Break the silence and call; let’s reconnect.
Today, I will lie in bed—a safe and well-known place where I have spent countless hours. I am frustrated, furious, and discouraged. Feelings left unaddressed because I don’t have the language to express myself. I am tired of missing out and being home alone while life continues without me. “Let me out!” I cry, trapped, screaming toward the sky. No one answers me; silence and tears stream down my well-worn face. There is no escaping this prison, and the only way out is death. Cancer may have won today, but I am also a winner. I chose cancer instead of death; it’s not always an easy choice.
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Thank you for sharing your vulnerability and bringing more awareness to the reality of your experience with cancer, Michelle. You are a warrior and I applaud you for speaking out.