Don’t let cancer define you: An essay by a childhood cancer survivor

By Lainie Jones

I had adrenal cancer as an infant in 1985, so the word ‘survivor’ has been part of my vocabulary my whole life. Even though I was too young to remember what I went through, my dream was to help other kids like me by becoming a pediatric oncology nurse.

At age 22, I started to focus on a career in nursing. I also turned into a full-time hypochondriac, which ultimately saved my life.

Two weeks before starting nursing school, I was diagnosed with stage II breast cancer. I was just 24 years old. After so many years in remission, I never thought I’d face cancer again. At that point, I changed my focus from becoming the nurse I had always dreamed of becoming to the patient I did not want to be. I had a lot of scans, tests, lost my hair and ultimately had a double mastectomy. Losing my hair was hard for me at first, but I quickly realized that it’s only hair and that hair grows back.

Through it all, I stayed positive and just kept going. Since my breast cancer diagnosis at 24, I’ve had breast cancer (three additional times in my lymphnodes) thyroid cancer (twice), melanoma (twice), sarcoma. (Yes, I’ve had five primary cancers and multiple recurrences.) I have done chemotherapy 4 time and have lost my hair 3 times.

After my thyroid cancer diagnosis – my fourth cancer -- I was diagnosed with a rare genetic mutation called Li-Fraumeni syndrome. This syndrome affects only 500 individuals in the U.S. It means that cancer will be a permanent fixture in my life.

Learning I had Li-Fraumeni actually put me at ease. I finally understood why I kept getting cancer. With this genetic information, my doctors know to monitor me very closely, which I am thankful for because early detection is what is saving my life.

This past June, I had surgery to remove my remaining adrenal gland on my right side due to a tiny tumor they saw on an MRI . This surgery was the first time I can truly say I was scared. I was scared because you have two adrenal glands and you can live with one which I have been living with since I was two, but living with none is life altering. It meant I would be on medication to supplement my cortisol hormones. One my MRI my doctor noted that he saw some adrenal tissue regrowth on the left side and there was a very small chance that this tissue could supplement my cortisol and I wouldn’t have to be on medication. Well I am always that small chance they speak of and in this case that small chance worked in my favor. I am living with no adrenals and living on adrenal tissue! I felt a huge sense of relief and even teared up when the doctor told me that the tissue was working. To top it all off that spot on my adrenal well thank God we took it out because it was close to turning into to an adrenal cortical carcinoma.

This made me realize that I need to help others focus on the importance of early detection which is literally what is saving my life. This is how @theearlydetective was born. I created this Instagram platform to not only share my journey but to highlight the importance of early detection. I have beat five primary cancers due to early detection. I want people to know that if you receive a cancer diagnosis your journey is your own. Don’t compare your diagnosis to someone else but let it help pave your journey to survival. My hope is that I can help save one persons life with my platform by encouraging them to act if something is not right with their health. The only person that knows their body the best is the person who lives in that body YOU!

Even though I know I’ll face cancer throughout my life, I won’t let cancer and my genetic predisposition define who I am. Instead, I let it empower me. Today, I work for ALSAC the fundraising and awareness organization for St. Jude Children’s Research hospital. I over see various galas and work with incredible donors and volunteers who are as passionate as I am about the incredible mission. Cancer may have kept me from going to nursing school, but I’ve still turned my diagnosis into a purpose to help others.

Follow my Journey @theearlydetective