Stage IV / Late Stage.
Those are some of the words most commonly used when we talk about late stage cancers. Some people can live years, though . . . so one would naturally wonder- why if we are terminal, are we still alive?
When I was diagnosed, I was given 18-24 months to live because my cancer was so advanced. It covered my liver, my spine, my pelvis and my breasts. Those first two years were such a blur. All I cared about was living. I don’t remember milestones for my kids, I don’t remember holidays, and I don’t remember literally anything that happened in 2013 or 2014. Living was all I wanted and I made great sacrifices for it. I had chemo every single week in 2013. Read that again. I. Had. Chemotherapy. Every. Single. Week. Looking back, I have no idea how I even managed that. I think I have subconsciously blocked that all out. 2014, I was able to drop to chemo every 3 weeks but could barely walk at that point and needed radiation to my pelvis. Radiation that caused so much damage to my bowels that I had to stop. I just remember wanting to be pain free that year and by 2015, for the first time in nearly 5 years, I was feeling better. Feeling better physically and actually being healthy however are two different things. I still had cancer. Even though my hair grew back, I lost the steroid weight, I had a bit more energy than before… it was still there. It actually never left. Even all these years later, it’s still there. Waiting. It caused so many other effects the past 4 years: blood clots, headaches, pain, anxiety, heart failure, depression, damaged joints, and weight gain. It just sits and waits until it can figure out how to mutate or work its way around my treatment. In the mean time, I have all those side effects that could kill me just as fast. How exactly do you picture someone when they are slowly dying?
When you look up the definition of terminal, it reads:
Adjective: 2. (of a disease) predicted to lead to death, especially slowly; incurable.
Well, that’s me in a nutshell, folks. I will die of my disease one day. It’s happening slowly. I will never be cured. I have a terminal disease. I have had friends die 10 years after their Stage IV diagnosis. One day, their cancer figured a way around that medication or mutated into a different subtype and within months- they were gone. I’ve hugged friends with my exact diagnosis who had no evidence of disease and six months later they were gone. I don’t honestly know why they are gone and I am still alive. Survivors guilt at its finest. But, because to you, I look “fine”, “normal”, and “healthy”; I live in this chaotic paradox where I try to live how I am perceived and yet my body is slowly being ravaged on the inside by cancer. Each year, I wonder if this will be the year my cancer “gets smart”. Smarter than my meds, smarter than my doctors, smarter than my body. I don’t know many almost 37 year olds that wonder if this is their last year on Earth every single year.
So the truth is, yes, I am still dying. I still have terminal cancer. It won’t ever go away. It has taken me many years to be at peace with that sentence. But I am here, alive and feeling okay today. I am going to try and live . . . not like I am dying but as life was truly meant to be lived- without fear of the future.