I am grateful for my cancer meds everyday. I am grateful that I live in a place where they are accessible to me. I am grateful that my family hasn’t been bankrupted to keep me alive. I am grateful for the pain relief they are able to give me. I am grateful even if I still can’t live a normal life, doing the things I once did.
But cancer medication also comes with challenges. Each of my 50+ pills per day has its own benefits and side effects. Some of the pills that keep me alive also greatly alter my mental health. While I wish I could wake up and enjoy each day to its fullest, I now can wake up with a heaviness and sadness to a level I had never experienced before.
I wanted to show an unfiltered look into a good and bad day. So I challenged myself to keep a diary, both when I am experiencing depression and another day when I am feeling hopeful. This is the result.
There is one week out of my five-week cycle of meds that causes a hormone imbalance and increased pain if I do not do self care by pacing my daily activity. Although I am on antidepressants, it is always the most difficult time to stay positive or energetic. Sometimes it lasts longer and it has lasted as long as a month. It can start to feel hopeless.
I wrote this over the course of three days to track my inner thoughts. It was very hard to do, as I felt sad and frustrated when writing it and too self consumed. I kept asking, why would anyone want to read this? Who wants to read a sad boring journal entry? I hope someone might benefit from reading it.
I hoped I would benefit from writing it.
It is back. The weight of it all. My mind feels heavy, dark and destructive. Again.
I feel ugly, inside and out.
This relentless feeling that it will never end creates a large peach-sized pit into my stomach.
I feel hopeless. And sometimes, I feel nothing.
The tears come and I want to hide and sleep away my feelings. But I know they will eventually come. Sleep just delays them.
Food pushes down on the pit. Cookies, cakes, anything to make it go away.
I want to shower and get dressed, but I feel too tired to do anything more.
The sunshine is my enemy. I do not want the suggestion of going for a walk. I want rain and thunderstorms, so I can feel no judgment in having a lazy day.
Nothing good is on TV, no good movies to watch, no books worth reading. I keep looking for something to get lost in.
I need some pain pills. I need three but it’s better to take two. How do people go from casually popping pills to being a junkie? I will just take two. I’ve read other cancer pain patients take less than me.
Even texting takes too much energy. I need to preserve it in case anyone asks how I am.
Do not mention depression. They will suggest how to make it better or will look at me with disdain. They will want me to go for a walk, but I know I am too weak to even go outside.
I am in pain. Nothing works. This life of pain sucks. I need to stay in bed forever.
I try to sleep and instead my mind wanders. What happens if my son’s (who has his pilot’s license) plane crashes? I cry with fear of that. Or what if a drunk driver hits his car on the way back from the airport? What happens when my parents pass? I cry, realizing my parents and husband are close in age and I just keep crying.
This stupid pain…I take my third pill. I am so weak.
I have an online store with my son where all of the proceeds go to charities for sexual assault recovery centres and cancer recovery. I need to respond to customers and package up our orders. But why bother? I have become a retail clerk and not even a good one. All I have is memories of when I was smarter and better at business.
I try to think of something happy. I think of my dogs, cuddle them, hug them, and they do feel good. I am a bad puppy mom. I do not walk them.
I hear my husband doing my medications in the bathroom. I am a shit wife. I offer nothing in return. He does everything and I do nothing. He will leave me by having a heart attack. He works so hard. When he is gone I will be alone. My son will need to quit school to step in for him. That is selfish. I am a bad selfish mother. I hate when people say I am brave or an inspiration. I am weak and needy.
I have so many things to do. I need to make a list for tomorrow. I write a dozen things down. Maybe I will prolong the timeline by two days.
I finally sleep. Eventually, I am able to turn a corner.
Today is a better day.
I got up and got dressed. It took a lot of motivation to do that, but I knew I needed to and was able to find the energy.
I need to change things up. It is time to get out of my negative headspace. Why was yesterday so negative and today is so different?
Are my hormones coming more into balance? What else have I done differently?
I slept in until 10, my preferred time to get up. I went to sleep last night watching the movie Cake with Jennifer Aniston, who plays a chronic pain patient and I related so much to her character.
I took half a Concerta this morning, my energy pill. Some days, after I take it, I will sleep even more. That leaves both my husband and I stumped as to why it has the opposite effect at least 50% of the time. The best day for me to take it is when I have rested a lot and taken it easy in the days prior. If I take one after I have eaten, I will be nauseated.
I go outside and it feels so good to connect to Mother Earth. With the sun beating on me, I think of how lucky I am for our house and the land it sits on.
The dogs are out and Hope, our dachshund, is cuddling beside me while Coco, our rescue, sneaks up to give me a sloppy wet kiss. The incessant barking and rough playing of our other dogs does not bother me. Have I learned to tune it out or accept that it is their way of communicating.
I think I am getting back on track and the dark days are behind me. Let’s see if it can last longer this time. It can feel like it will never end. But it does, and for a while I will wake up feeling a little better each day.
Those dark thoughts are lying to me. My depression and anxiety are covering the real me. I am still in here. I need to push those thoughts out.
I take deep breaths and push the negative thoughts out one by one, for every negative thought, I breathe in and out three times.
My depression and anxiety do not own me. They are tricksters playing games with my emotions. I visualize a better place and repeat until my mind knows it off by heart. Then I say it until my throat is sore and I fall into a nap.
I dream. Today, I feel strong. I see us in our garden taking out the weeds and spraying refreshing water on the vegetables and herbs we will be eating. We are walking through the magic garden in our backyard, where we stop and talk with Faith the dragon (a sculpture). At night, she comes and spreads fairy dust over the garden.
When I wake up, I jump in the shower, shave my legs, do a face mask, condition my hair. I look great. I am beautiful.
Let’s put something stylish and comfy on. Let’s do something kind for others. Think of three things and then we will do them.
Let’s put some healthy yummy food into our belly. I feel so good after eating well. My body feels taken care of.
I have not thought about pain, as I have put that aside. I feel free. I feel joy.
I remember that I control my thoughts and mind. They only enter in because I let them. I am strong enough to walk away. I can do it. Do you know why? Because I have done it countless times before.
As I reread these letters, I can see that the truth lies somewhere in the middle. The light and the dark are both a part of every day, as they are for everyone. I wish I had more control but I am thankful that I still have both. That there are days when I can enjoy the sun, laughter and my loved ones.
~ Karla xoxo
Karla shares her story with Wildfire Magazine and was published in the “Canada’s Young Survivors” April 2022/ May 2022 issue!
You can pick up your own copy of the full issue on or after April 16th, 2022 at wildfirecommunity.org/shop
Karla Stephens-Tolstoy has stage 4 chronic cancer, diagnosed in 2018. She is Her2 negative, IDC. She takes 50 pills daily, including Ibrance and letrozole, her cancer fighting pills. Karla is the co-owner of the online store StandUpSpeakUp.ca with her son, Zach. Through this venture, they are proud donors to various charities. All proceeds of their limited edition Healing and Empowerment Scarves are donated to Wellspring Cancer Support Centre.