I will never forget the face of the doctor who told me I had cancer. The look in her eyes seemed baffled and definitely rattled. It was as if all of her practice as a doctor did not prepare her for this moment. I could tell she had said the words before but I was definitely sure that she had never told a healthy 40-year old that she found a mass, a definite tumor.
That mass turned into Stage 2, rectal cancer. Rectal Cancer! Cancer…IN…MY…BUTT. If you are reading this now I would like you to think of your last bowel movement. The entire process. Pulling your pants down, sitting on the toilet, taking some time to be with yourself, finishing the job, cleaning yourself up and walking out. For rectal cancer patients, we are in constant fear of the bathroom. Chemotherapy is the juice of the devil himself. I am pretty sure that the Chemotherapy I had was also laced with prune juice. I had never been so overcome with trips to the bathroom in my life. It was as if there were heads of aliens vomiting out of my butt hourly. I was doing 48 hours of chemo, connected to a pump via my chest. I was in constant pain. In my healthy years I never even took an aspirin. I have a very high tolerance for pain, and when I am in it, I know its bad.
I hit my highest point on the pain scale during radiation. Previous to radiation I made the awful decision of googling “radiation for rectal cancer patients.” I was cowering under my desk after countless posts about the pain I was soon to endure. I became overcome with the anticipatory stress of it all. I would cry to friends and family about how awful it was going to be. I was told “you can get through anything,” “you don’t know until your in it.” I will never ever forget the radiation experience. The radiation office was in the basement of the medical facility. It felt like another planet, another world. They were friendly as they sat me down on the moving table. But they left the room as the radiation waves silently invaded my pelvis. What came next was the most gruesome. My skin was burned to purple and black. I was covered with blisters (remember this is RECTAL cancer). Every time I went to the bathroom I was peeing glass and spitting out Chernobyl bowel movements. I thought I had come to the end of my ability to fight for myself. I was not eating well, I was not comfortable in my skin. I wanted to die. I had moments of telling myself that if I cannot get through this, then maybe I had a good life and it was time to move on.
I remember one week of radiation specifically. I had to change my appointment times to the afternoon. I spent the morning doubled over in screaming pain on the toilet…EVERY MORNING. This week though, the doctor looked at me and stopped the radiation for the week. She was worried that I was so sick I could not finish. She asked me if I had pain medication at home. I did. I had a procedure and had some leftover pills. She advised me to start taking them. She wanted me to be comfortable, she could see the toll it was taking on me both emotionally and mentally. I trusted her and I took them.
I took them every day. When I swallowed them I trusted myself again. It relieved the stress, the pressure, the anxiety and most importantly it stopped the pain. I stopped going to the bathroom for hours when I was on this magical pill. I could feel my muscles relax and every layer of my body going back into its place. I could feel myself in my skin again. I could sleep. I could laugh. I could eat. There were a lot of things that Oxy “could” do.
What it didn’t do was cure my anxiety and in fact, it tripled it. I had never felt so out of control emotionally in my entire life. I acted as though I had stage four cancer and I was dying at any moment. I certainly had cancer but my emotional regulation was out of whack. I wasn’t able to cope with every day struggles of life. I wasn’t able to multi-task. I wasn’t able to recall what someone was saying when they were speaking to me. You have to also remember that my body was now filled with four months of chemotherapy, 35 days of Radiation, Chemo was connected to me during radiation 5 days a week. Everything that I read told me that the things that I wasn’t able to do was surely chemotherapy related.
When I emailed the doctor to let him know I needed to renew my prescription he told me he was unable to do so. Yeah……Um…I literally panicked. I had a complete baby cry, tantrum thing in my room in front of the email. I couldn’t imagine my life without this pill. I could not imagine going one step further in this life without this pill. I was going to explode without getting this pill. I am not sure what intervened. I have some spiritual gangsters in my life who would say that this was the voice of God. Whatever it was, told me to go to google and type “how to tell if you’re taking too much oxy.”
My eyes glanced at the screen and I saw the first sign and symptom. Excessive sweating. I had to change my shirt three times that week in the middle of the night. I was sure that I was in full-blown menopause. I kept looking down the list, emotional regulation, depressed, anxious, etc. All of these were happening at the most intense rate. I looked at the screen and re-read this probably about 50 times and realized that I could not hide from this. I was taking too much oxycodone. I stopped. That night I stopped taking them. It was not easy but I couldn’t walk around with an addiction to pills AND cancer. So I had to make a choice. I chose cancer and it’s weird to even write that. Within days my symptoms subsided and I came back to earth. I didn’t even realize I was orbiting.
In the midst of my quiet storm, I was very clear-headed and knew exactly what to do. A lot of people do not. A lot of people continue taking them and fall away into the abyss. They ride the oxy train to the heroin station. I guess I want everyone to know that it’s easy. It is really, really easy to fall into taking something that makes you feel like your load is less. It is really easy to want to take something to ease the burden to stop feeling anything at all. It’s really easy to justify that glass of wine or that glass of whiskey at night. What we really have to remember is that pain is meant to be felt. Pain is meant to hurt. People are suffering ya’ll. People are suffering in pain all over this world.
We need doctors who want to listen to patients. We need options that aren’t addictive. We need close regulation to ensure that we don’t end up with an addiction. We need the medical field to understand that we don’t want the pills but you leave us with no other choice. You leave us with no education and you get uneducated responses to trauma. We need you more, not less. We need understanding. We need practical advice not the standard level of care bullshit. We need more advocates for the chronic pain community. Stay woke.