To Those Who Feel Like A Drug Seeker

This is an open letter to those lung cancer patients who feel like a drug seeker.

You are not alone. I was diagnosed on November 27, 2012, with stage 4 non-small cell lung cancer. I was a single mom to an active 7-year-old and had just turned 33 less than a month earlier. They found the cancer because it spread to my brain and shifted it to the point I could no longer see. Living with headaches for 8 months, I had most doctors here thinking I'm a drug seeker. I even told them I lost my vision for a bit yet no one ordered any scans here.

Will someone take my pain serious?

Traveling to Atlanta for Thanksgiving probably saved my life. I was vomiting a white liquid and the pain was insufferable. My vision was messing up again and I just lay on my father's couch. Family and friends I visited were beginning to think I had a drug problem. Finally, enough was enough. Barely able to muster the words, I told my dad I needed to go to the ER. He asked if he wanted my mom or him to take me while the other watched Karley. I knew my father would literally kill for me, so I told him to let my mom and he watches Karley.

After removing the brain tumor with a craniotomy, it was tested for biomarkers and I was found to have Stage 4 NSCLC. I was unable to fly for a bit after gamma knife surgery so I didn't start my first-line treatment well into a month after diagnosis. Gamma Knife can be painful if the correct amount of pain medications aren't introduced immediately after. For me, they were a little late.  I've never screamed in a hospital or even a public setting out of pain. I did it on this day, for the first time.  When the screws were removed, it was like pure fire coming out of the drilled holes. After a huge debacle at the front desk, my mom finally got me some pain relief.

I know I looked grotesque. I had holes in the side of my head like Frankenstein that kept bleeding because I couldn't stop crying.

I get no relief from pain

Since beginning my Tarceva, the first-line targeted therapy treatment, I have been prohibited from eating grapefruit and taking NSAIDs. So, for me, no aspirin, Advil, or any other such pain reliever. I am only allowed to take Tylenol which most of you know does nothing for the pain. Don't get me wrong, it can knock out a fever so it can be helpful. But in the usage for pain, it's obsolete.

My doctor started me on tramadol before I was diagnosed. I got used to it and she slowly increased the amount of pain medication I was getting. Therefore, my body became immune to these pain relievers and they were no longer working.

Lately, I can get no relief from pain. Tarceva makes my toenails grow in and curl, gives me headaches, and let me just tell you how much of a klutz I am.  Since my stroke in 2020, I'm constantly tripping over things. I will have bruises all over my leg and barely be able to walk, and all I want is some medication on hand for occasions such as is. But people have been abusing the system so much that it is hurting cancer patients like me. They want me to go to pain management. I can't afford another copay and doctor at this point.

Seeking support from the lung cancer community

Fortunately, I asked the advice from the lung cancer community. They all concurred that I should try palliative care. It's a pain management for not only the cancer but side effects that go along with it.

So next time someone gives you a hard time, take it with a grain of salt and consider palliative care.