I was diagnosed with stage IV lung cancer in August 2013. Many people don’t understand that if you are diagnosed with advanced stage lung cancer like me, there is currently no cure. There are drugs that help treat the cancer and give you more time on this planet, but you have to deal with long-term effects for the rest of your life.
Some of these effects are physical. I have neuropathy, with shooting pains that go through my fingers and feet that prevent me from sleeping. I have body swelling, bloating, gas, and constipation. I had brain metastases that caused me to lose control of the right side of my body. Because of this, I can’t drive. I can’t use my right hand, which means I can’t easily open car doors or use a knife and fork. These are simple things, but they’re so taxing.
Most of the effects are emotional. Battling the physical symptoms every day is psychologically challenging. It’s also difficult to rely on other people. I’m so happy to have my wife, who is very understanding a great caregiver. She does a lot for me. But it makes me feel inadequate. There are things I want to do for her and for others that I can’t.
The constant monitoring causes its own host of issues. Every few months, I need to go to the hospital for scans and tests, which takes about 6-7 hours from door to door. This is physically painful (it takes on average 7 needle sticks just to get the IV in), but also emotionally draining. You feel anxiety about the results of the monitoring, which leads to insomnia and fatigue. You just aren’t functioning at your best, but don’t get as much leeway from other people as you would early in your diagnosis.
It’s been 8 years since diagnosis. It’s easy for people to forget I am living with cancer. I don’t look like a cancer patient and still function relatively well. No one asks me how I’m doing, how my treatment is going or how scans are looking. Sometimes, it’s as if cancer didn’t happen at all. My own family sometimes forgets. They try to look out for symptoms and they’re caring, concerned, and show me lots of empathy, but they don’t quite understand the emotional and psychological effects living with cancer can cause. I coined a term to explain it: “silent suffering.”
Negatives aside, there is great beauty in living with a condition like this for so long. You get to understand life in a way you couldn’t without cancer. Once you understood what life is really all about, the cancer doesn’t bother you. The treatment doesn’t bother you. Your glass is always half full.
If I kept going on and on about gruesome treatment and feeling depressed and sad, it would take over my body and mind. It’s not happening to me anymore. Am I in pain today? NO. None of my past experiences are true today, so I try to enjoy what I have right now.
My doctors noticed this change in perspective. They would tell me my scans don’t look good and ask why I didn’t look more worried. I would say, “What’s the worst you could tell me? I already have cancer. I am just happy to be here and experiencing this. If I’m still inhaling and exhaling, my life is sweet.”
People are living a lot longer than previously ever thought with lung cancer. This is amazing, but also unchartered territories. It complies me to bring awareness to what it’s like to live long-term with lung cancer. I want people to understand how living with cancer impacts those affected, but I also want people to see that you can live with lung cancer.
I became a LifeLine mentor to help those newly diagnosed. They come to me with their fears – fear of treatments, fear of pain, fear of losing family, losing jobs, fear of not seeing tomorrow, fear of death. I try to help them grapple with these fears. The reality of your mortality can really smack you in the face when you are first diagnosed. But it also teaches you to appreciate everything there is. I try to help my mentees see this beauty as well. I want them to overcome their fears and go beyond them, to finally be free from limitations that surround them. That is the beauty of life as a long-term cancer survivor.
- Survivor Resource Center
- Advice from a Long-term Lung Cancer Survivor
- Coming to Terms with a Lung Cancer Diagnosis
AJ Patel is an eight year stage IV lung cancer survivor. Back in 2013 he was told he may not survive six months. After battling a complex craniotomy, several rounds of chemo and radiation, AJ was losing hope. Biomarker Testing was not well known then, but the doctor ordered the test and it literally saved his life. Today, AJ spends all of his time outside of a full-time legal career to help others affected by this disease, advocating for Biomarker Testing and most of all, being a voice of hope. AJ lives in Southern California with his wife and college aged kids. AJ finds strength and wisdom from meditation.
AJ, God Bless You. With a very few tweaks, your story and outlook matches mine. I too am an 8 year survivor and thankfully, have been able to continue to work regularly. My brain mets have not resulted in any permanent effects and my driving suspension was only 2 months long. I love your story and wish you many more years of “silent suffering”. Take care - Jeff
Thank you for the kind words. I wish you well and happiness on your journey, my friend.