After being diagnosed with lymphoma, I scheduled consultations with three oncologists, but only one provided me with the hope I needed.
In July of 2009, I was diagnosed with small lymphocytic lymphoma after a biopsy of 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 it was not long enough. I didn’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 OK.”
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.
The name of my hero is Dr. Lyle Goldman. I still see him and admire him more today than the day I first met him.
I am 70 years old, and I have grandchildren who I enjoy more than life itself. I am so glad I chose the doctor I did, as all that he said has been true so far.
I have needed treatment: Rituxan (rituximab), Gazyva (obinutuzumab) and radiation, but I live a healthy normal life despite my disease, thanks to the treatment I’ve had when he says it’s time to do something.
Since the beginning I’ve been what they call a “watch-and-wait” protocol, and I’ve been able to live a full life, often putting my small lymphocytic leukemia on the back burner and only dealing with it when I have to.
I am now receiving subcutaneous infusions for immunoglobulin antibodies to help my compromised immune system. It has helped tremendously, and I’m so thankful for this.
Now my disease has progressed and it’s time for me to take the next step. I recently began an oral pill called Calquence (acalabrutinib). It’s a BTK inhibitor and has already begun to kill the cancer cells in my lymphnodes that have not only increased in number, but many have enlarged since my last CAT scan three years ago.
After four weeks of treatment, I feel like a new person. It’s been a miracle drug for me and I’m beyond grateful for all the treatments continuing to emerge for people with cancer.
So yes, it has required maintenance on my end, just as my doctor said it would. However, I feel great on a daily basis now and that’s what I choose to focus on.
I refuse to concentrate on the missing tile of my life’s mosaic.
It took me time to wrap my head around my diagnosis. 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 someone else.
This post was written and submitted by Linda Cohen. The article reflects the views of Linda Cohen and not of CURE®. This is also not supposed to be intended as medical advice.
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