Chronic Lymphocytic Leukemia Survivor

There is Life After Diagnosis

Leesa Gabel describes herself as the most positive cancer survivor around. Her chronic lymphocytic leukemia diagnosis has inspired her to complete a half marathon at Disney World, ride her bike 65 miles around Lake Tahoe and encourage others on LLS's Team in Training. She is a passionate advocate for patients, convincing members of Congress to support more funding for research. She also helps newly diagnosed people realize that life doesn't end after hearing those dreaded three words.

My endocrinologist discovered something with my blood was abnormal when I went in to see why I’d been so tired. I have Type 2 diabetes, so I thought perhaps my blood sugars were off or I hadn’t been eating right. He referred me to a hematologist, who told me it looked like I “had some leukemia” in me. Blood tests and a bone marrow biopsy determined that it was chronic lymphocytic leukemia (CLL).

I found my oncologist through the Leukemia and Lymphoma Society (LLS). He suggested watchful waiting. That was hard to hear. I had active cancer cells in my body, and I felt like I should be doing something about them. That’s what prompted me to start researching.

My grandfather had passed away and I knew he’d had CLL. After learning more about it, watchful waiting made sense, although it did take some patience. I also discovered that I was not the typical demographic for having CLL. It tends to show up in older men, and I was a 36-year-old female.

Watching and waiting lasted only about six or eight months because my doctor found a clinical trial for me. The drug in the trial was a type of chemotherapy. The side effects weren’t too bad. They told me I may or may not lose my hair, but it still came as quite a shock one day in the shower when big clumps came out in my hands. My husband took me to an expensive salon, and they shaved my head for free. Not long after, I received a surprise gift. The stylist who shaved my head had told her mom my story, and her mom made a quilt for me. It became my special quilt, and only I could use it.

My husband and I took our kids, who were nine and four, to a local Cancer Action group with a great program that explained cancer to children. They both handled the entire experience very well. We didn’t keep much from them. I put on a cheery face when they were around because I didn’t want them to see how bad I felt some days. As they got older, they realized that some of my days were better than others.

After six months, I reached the level of toxicity for the drug in the trial, so I had to stop. Fortunately, my levels came back to what we considered manageable, and I had a period of remission for about a year or two. I highly recommend trying to find a clinical trial. All of the expenses related to it were completely covered, and it was a good experience for me. In fact, I’m currently looking for one that involves having CLL and Type 2 diabetes.

I had blood work done at regularly scheduled checkups, but when I started having night sweats a year or two later and we noticed my levels going up, I knew the CLL was back.

I was preparing for a 100-mile fundraising bike ride around Lake Tahoe, and I was worried the relapse would keep me from participating. We did a quick treatment cycle of a standard chemotherapy for CLL – a few weeks on and a few weeks off – and my body responded really well. Six days after treatment ended, I rode 65 of those 100 miles. My husband waited for me at the finish line so we could cross it together.

That is pretty much how it’s gone since I was diagnosed in 2008. I still have regular checkups, but I’m very in tune with my body and can tell when I’m ready for treatment again. I don’t jump right into treatment automatically, though, and I try to avoid unnecessary testing. For one, I don’t want to max out my insurance, and I also don’t want my body to develop a tolerance to the drugs for when I really need them.

The worst side effect for me is probably the intense fatigue. Sometimes I’m utterly exhausted. Early on, I could still do the marathons and bike rides, but now those activities require a lot of effort. I’ve found certain things make it easier to live with CLL, such as eating healthy and exercising. I also work in a supportive environment. It wasn’t always that way. I knew my health came first, so I left the job I had and found a new, wonderful position.

I wouldn’t have called myself a particularly strong person before CLL, but I have learned how to advocate for myself and for others. I realized I can’t rely on someone else to take care of me. I’ve become more involved politically about patient rights and the laws surrounding insurance and cancer care on the state and federal levels. I’m also involved with Livestrong, LLS and Imerman Angels. I participate in fundraising and awareness events, and I talk with people who’ve just learned they have cancer.

When I talk with people who are newly diagnosed, I offer this advice: Pick a doctor you trust. I’m with the same oncologist I started with more than 10 years ago. He allows me to determine when I’m ready for treatment and what I want to do (within reason, of course), and he’s very supportive. That’s why he is still my oncologist. Find a source of faith and hope. Learn more about CLL. Find good resources, and read patient stories. They’ll help you understand that there is life after a cancer diagnosis. On the bright side, having a chronic form of cancer gives you some time to adjust your life to having it. Then, if it does become acute one day, you’ll at least be better prepared. Every day that you wake up is another great day.