My Experience With Pain
Last updated: July 2023
Pain comes in many forms when it comes to cancer. It can be physical pain but also emotional.
We each experience pain differently, and just like our journeys with cancer, pain is also unique. My experience with pain has been all over the place, and I will discuss with you a few things that I have experienced.
From cheat pains to cancer diagnosis
I am currently 99% pain-free these days, but my cancer journey didn’t start that way. It is often said that lung cancer cannot be “felt,” so when I was experiencing chest pains, my mind did not even remotely wander to the idea of lung cancer.
The pain I was feeling was indeed a blood clot in my lung. Once admitted to the hospital and placed on some medication, the pain was not as bad. I would later get a bronchoscopy where I was twilight sedated, and that was painful. Not because of the procedure but because I was not sedated properly, and I work up in the middle of the procedure.
A few days later, I was told that I had cancer. I moved my care north to Chicago, where my new oncologist ordered a brain MRI and biomarker testing. I don’t remember being in much pain, but I was also very confused and scared.
I would eventually start chemotherapy as the targeted therapy that I was placed on did not work. I did four rounds plus two more maintenance rounds, all with relatively no pain. It wasn’t until I started radiation that I started to feel physical pain.
Dealing with escalating pain
My first rounds of radiation were to my lung, and it felt like I had a sunburn on my chest. My cancer didn’t stay stable for long and was starting to progress in my bones, and that was when the pain really started.
I remember being in Chicago and going thru testing and meeting with my oncologist. I had a lot of information thrown at me. My hip and shoulder had started hurting, but nothing was showing up on my scans.
We made the decision to move my care to Dana Farber so that I could begin a clinical trial. It was during the intake for the trial that we learned that I had lesions on my right hip and left shoulder. They wanted to give me a wheelchair, but I ended up with a cane and shoulder sling because it was too difficult for myself and my sister to travel with a wheelchair.
The trial drug took care of the lesions, but before I was able to get the medication, I was on a lot of heavy painkillers. I have vivid memories of not being able to sleep due to my shoulder pain and not being able to lie down properly.
Navigating loss and seeking support
As I mentioned earlier, there is also emotional pain. I have met so many wonderful people due to my cancer diagnosis and have lost a lot. It hurts every single time I think about it.
I have also been in therapy to discuss the emotional toll that cancer has had on me. It is helpful to talk to a third-party individual who does not have a role in my life and can give me feedback on the things that I am feeling. Go to therapy if you can. Talking to someone does help.
Pain, whether it is physical or emotional, is unique to each of us. It is a hard time in our country to get the proper medications sometimes but push until someone believes you.
Cancer is hard, and you should be able to talk to someone about the complex emotions that come along with it.
Have you ever used videos as a way to advocate for lung cancer?