Leukemia Survivor

Life is about how you live “Plan B”
Positive mental attitude and inner strength help CLL survivor live in the moment

Bobbie Bloch, a chronic lymphocytic leukemia survivor, overcame an overwhelming family history of disease and fought her way through treatments, several new doctors and multiple remissions over the past years.

 

My family has an extensive history of cancer. My mother had lymphoma and passed away at 58, and the disease claimed my father at age 75. I also have a cousin with lymphoma, and my maternal grandmother had a malignancy believed to be lymphoma. Plus, my sister was just recently diagnosed with CLL. So considering my family history, that first twinge I felt in one of my glands bothered me. I went to my doctor right away, who sent me for blood tests and suggested a visit to an oncologist.

In April 1993, I was diagnosed with chronic lymphocytic leukemia (CLL) at the young age of 51. I was stunned and sad. Luckily, CLL grows slowly and mine was caught early at Stage 0. We “watched and waited” for nine years. Then one day, all of the nodes in my neck seemed to explode at once and the doctor started treatment immediately. At the time there weren’t a lot of options for CLL. I remember him telling me, “If we can hold it off long enough, there’ll be something for you. There are new developments taking place every day.”

Treatment with fludarabine for six months seemed to work, but then my doctor of nearly 10 years moved away. Although the thought of searching for a new doctor was daunting, a friend convinced me that I should take care of it while time was still on my side. She was right. I met with someone I’d previously considered and was impressed with how knowledgeable he was as well as his caring nature and bedside manner. I felt secure once again, and it wasn’t a moment too soon.

Shortly after, an enlarged lymph node in my armpit turned out to be Hodgkin lymphoma, so my doctor started me on the ABVD (Adriamycin, bleomycin, vinblastine, dacarbazine) chemotherapy regimen. I went through six months of very difficult, uncomfortable treatment, experiencing hair loss, fatigue, nausea, pain and neuropathy. For four of those months, I suffered through what I called “Blue Mondays.” My treatments were on Thursdays, and the following Monday I would have horrific jaw pain. Thankfully, my doctor was able to help, and somehow I made it through. When you don’t have a choice, you just do what’s necessary.

After treatment ended, the main lasting effect was neuropathy, which I treat daily with vitamin B12. The lymphoma has never returned, but CLL is a chronic condition for me. I’ve had three recurrences, all treated the same: My white blood cell count goes up, my nodes enlarge, my doctor starts me on rituximab (Rituxan). My count goes down, my nodes return to normal, and we start all over. Watch and wait.

I recently began a promising new treatment – ibrutinib (Imbruvica) – and so far the results have been great. I’ve experienced some minor side effects but nothing I can’t handle, especially because everything in my body has seemed to resolve itself. This is a treatment I’ll likely remain on for the rest of my life, as it should continue to help stabilize my disease. My doctor’s words still ring in my ears: “If we can hold it off long enough, there’ll be something for you...”

Through my cancer journey, I’ve learned to appreciate and be grateful for all that I have. I found a support group that was my lifeline for several years, and I’ve met some amazing women. It’s so important to find support when you’re going through something like this, and now I surround myself only with the people I love and care about—and who care about me. I spend my time doing things that make me happy, and I always try to keep a positive mental attitude.

I’m currently doing well. I’ve been through four doctors, several treatments, and the ups and downs of managing a chronic disease. My diagnosis was a reality check; I was forced to come to terms with my own mortality and values. After it all, however, I’ve realized just how strong I am. This may not have been my life plan, but I discovered that life isn’t about “Plan A,” it’s about how you live “Plan B.” Your health is precious, so take good care of it and enjoy yourself! Live in the moment.

 

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