A Cough That Would Not Quit

Hello everyone!

My name is Julie and my journey with cancer begin almost two years ago now. I was working full-time at a job I absolutely loved and I noticed I was getting a cough that wouldn't go away. I finally gave in one day and went to urgent care before a small weekend trip and they did a chest x-ray, called it pneumonia, and said I would be better in a few days.

A few weeks later, with no relief from my previous medication, I went back in to see my primary doctor. They did another chest x-ray, gave me a different medication, and sent me on my way.

At my wits end about three weeks later with a cough that just would not quit, I begged my primary for a CT scan. I had been googling my symptoms and lung cancer came up, but having worked in a school, I was more afraid that I had a tuberculosis diagnosis and was going to disrupt the entire school with this news. After my CT scan, I got a call at work immediately the next morning from my primary to come in with a loved one. I knew right away that it was cancer.The fear that rushed through my body when I got that call is something that I will never forget.

After meeting with my primary, I was quickly scheduled for a biopsy and a full PET scan. It was official, I had Stage IVNSCLC adenocarncinoma, EGFR deletion 19. I had cancer in both lungs, lymph nodes in my chest, and mets in my breast bone. Because I had the EGFR mutation, I was able to start on a targeted theraphy, Tarceva immediately. I had an almost immediate response to the Tarceva. After a few months, my lungs had cleared up, my bone met had healed, and my cough was gone. I had one persistent spot on my lower right lobe, so in May of 2017, I had a right lower lobe resection. At that point I was considered NED!

Fast forward to February of 2018. I was having some pain in my left leg and went to urgent care one weekend because I was finding it difficult to walk. After a bunch of tests and referrals, we found out that I have a 6.8 cm tumor in my left femur and I just had orthopedic surgery to prevent the femur from breaking. After I heal from the surgery, I will be undergoing radiation to get rid of any remaining microscopic tumor cells. I also switched from my first line treatment of Tarceva to Tagrisso and I'm hoping to get a long run out of Tagrisso!

I think the hardest thing for me in this journey has been the mental battle. I know in my heart that I will be okay whatever happens with me physically, but I struggle for the pain that my family, especially my two young children, will endure when I run out of time with this disease. I lost my mother when I was 23 to kidney cancer. It was three months from the time she was diagnosed until the time she died. It was the hardest point in my life. I don't believe my parents fully told us how serious her illness was and we didn't really know all the details.

How can I make that experience that traumatized me for so long different for them? While I know that I can't protect them from the pain, I'm doing my best to create lasting memories and enabling them to be somewhat empowered in "our" journey. We take adventures, road trips, and YOLO excursions when we can and are trying to make the most of our lives. I also have them seeing counselors so that they have the language and skills to cope when things get harder with my diagnosis. We talk openly and honestly about my cancer and we let them know that they can always ask questions if they have any. They attend Camp Kesem every year, meeting other kids that have a parent who has or has had cancer. We've attended a retreat through Inheritance of Hope that taught my husband and I how to build a lasting legacy for our kids when facing a terminal diagnosis.

My hope is that looking back, my kids will know that I did everything in my power to make sure that they will be okay, no matter what happens in OUR cancer journey.

Editor’s Note: We are extremely saddened to say that on April 1st, 2023, Julie passed away. Julie’s advocacy efforts and writing continue to reach many. She will be deeply missed.