In July of 2009, I was diagnosed with small lymphocytic lymphoma (SLL) after a biopsy of the lymph nodes in my neck. Of course, I did what everyone says not to do. I went online to read about it. I read there was no cure, and the average lifespan after diagnosis was 10 years. I was 57 at the time, and all I could think was that’s not long enough. I don’t even have grandchildren yet!
I set up three consultations with oncologists. The third one said to me something to the effect of, “You will live with this for a long time. Forget the 10 years. It’s just an average, and you’re not average. You are you, and you discovered it early. There are lots of wonderful things being developed on the horizon. Your disease will take a step, and you’ll take a step right next to it with whatever you have to do. You’ll be okay.” Then he gave me a hug before I left. I said to my husband, “This will be my doctor.” He gave me hope the way the others didn’t. Yes, they told me it was indolent but not in the same way my doctor did.
I am now 70 years old and have grandchildren who I enjoy more than life itself. I am so glad I chose the doctor I did. All that he said has been true so far. I have needed treatment ― Retuxin®, Gazyva®, and radiation ― but I live a healthy, normal life despite my disease thanks to the treatment I’ve had when my doctor says it’s time to do something. Since the beginning, I’ve been what they call “watch and wait,” and I’ve been able to live a full life, often putting my SLL on the back burner and only dealing with it when I have to. I am now receiving IVIG infusions for immunoglobulin antibodies to keep me from getting sick. It has helped tremendously, and I’m so thankful for this. So, yes, it has required maintenance on my end, just as my doctor said it would. However, I feel pretty great on a daily basis, and that’s what I choose to focus on. I’m not going to focus on the missing tile of the mosaic of my life.
It took me time to wrap my head around my diagnosis for sure. I had to understand what it would require from me, and I had to just do it. It took some time to get there. I was scared to death at first with what I told my kids was a cancer alarm that woke me up every morning. It didn’t take long after seeing my doctor every three months to realize I had to decide to live alongside my diagnosis.
I am beyond grateful to be able to share my story 13 years later with the hope that it will help others.
Linda
Small lymphocytic lymphoma (SLL)
