ALK-Positive Lung Cancer: My Mother’s Story

In 2019 my mother was diagnosed with Stage 4 ALK-positive lung cancer.

November is Lung Cancer Awareness Month, and we’re sharing a personal message from John Samuels, Better Health Advisor's founder and CEO.

In 2019 my mother was diagnosed with Stage 4 ALK-positive lung cancer. The past few years have been a roller coaster, but I'm thrilled to share that her condition is currently stable.  

Many people associate lung cancer with cigarette smoking. Smoking is the #1 risk factor for lung cancer, but it's not the only cause. ALK-positive lung cancer occurs in approximately 5% of all lung cancer patients, and it isn't associated with smoking or air pollution. Instead, it’s caused by a mutation of the ALK gene.

Like anyone else who has a loved one coping with an illness, my family and I want my mother to get the best possible care. As a health advisor, my work focuses on helping people access great healthcare, but my mother's illness has reminded me how important it is to keep things in perspective.

I think of it this way: When you’re in the middle of a swimming pool, it’s hard to see the way out. It’s easier to see the whole pool from up in the bleachers.

Recently, my mother had a bad cough. For a few weeks, it was getting worse, and her oncologist wasn’t taking it seriously. My mother called me and asked, “What do I do?” She was having a hard time reaching the oncologist and didn’t realize she had another option—calling her primary care physician about the cough. At the time, my mother’s frustration limited her perspective, but zooming out helped her see the broader picture. 

Inspired by that conversation, I want to share a few insights that come from helping my mother and the rest of my family manage her care.  

  • Be mindful of your emotions. When you care deeply for someone, emotions run high and things can get blown out of proportion.
  • Acknowledge and respect your loved one's wishes. When it comes to your loved one’s health, their opinion matters more than your own. Be present, ask them what they need from you, and listen to their answers.
  • Talk to your family members and determine who can take on different responsibilities. Who will attend appointments? Who will manage insurance issues? Who will talk to doctors? Create a plan that works for everybody. For example, my sister lives in Pittsburgh and accompanies my mother to doctor’s appointments. I find ways to help from a distance, such as fundraising for ALK Positive, a nonprofit organization that provides support, empathy, and research funding for people with her illness.
  • Take care of yourself. Managing a loved one’s care can be stressful, so pay attention to your own physical and mental health, too. If you need to step back from certain medical situations, give yourself permission to do so.
  • Pace yourself. Recognize that you and your family may be in it for the long haul. Take breaks when you need them.
  • Stay as organized as possible. Make a file of important documents and information, including healthcare proxy, contact information for doctors, list of medications and dosages, etc.
  • Consider hiring an outsider expert health advisor. A health advisor can help manage your loved one's care, allowing your family to spend more quality time together.
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