I have always been plagued with nagging headaches, so when they intensified in late 2010, I wasn’t too concerned. But when my eyes began involuntarily moving rapidly back and forth as I was writing Christmas cards, I knew the symptoms were a sign of something serious. A magnetic resonance imaging (MRI) scan of my brain found a 1.5-cm mass in the right front parietal lobe, which was later diagnosed as grade II 1p/19q non-codeleted isocitrate dehydrogenase-1 (IDH1)-positive oligodendroglioma.
As is typical with this type of brain cancer, I had surgery to remove as much of the tumor as possible, but I chose not to have immediate adjuvant radiotherapy or chemotherapy. At the time of my diagnosis, clinical trials didn’t show a survival advantage, and I decided to pursue a watchful waiting approach instead. Also, I was a practicing nurse and was anxious to get back to my patients and my normal life.
Coping With Treatment Side Effects
Two years ago, my brain tumor progressed. After deciding against additional surgery, I agreed to 6 weeks of intensity-modulated radiation therapy, followed by a combination chemotherapy regimen of procarbazine (Matulane), lomustine (Gleostine), and vincristine. But side effects from the chemotherapy, including a body rash from the procarbazine and such severe peripheral neuropathy from the vincristine that it interfered with my ability to care for patients, caused me to stop taking those drugs. I continued on single-agent lomustine, which was successful in halting disease progression, but after 3 cycles, I had to abandon that drug as well because my blood counts had dropped dangerously low.
Since then, routine MRI brain scans show I now have two tumors, each about 2 cm in diameter, but they have remained stable. And even if they start to grow, other than risky surgery, I’m not sure what my treatment options would be or if any would be viable for me.
Preparing for Disease Progression
The headaches from the cancer, ongoing neuropathy in my hands and feet from the chemotherapy, along with cognitive difficulties and memory loss from the radiation therapy have forced me to give up taking care of patients. However, I am still high functioning enough to work full-time as a clinical research associate, although it takes me longer to complete my daily tasks, and I occasionally misplace files and personal items.
I’ve transitioned from thinking about how long I might live to how well I want to live. Quality of life has become paramount to me….— Kim Leary, RN
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Still, I’m determined to live every day as normally as possible and also to have more fun. My husband and I have scheduled date nights, and I make sure to have regular outings with friends. My work, family, and friends have kept me grounded over these 8 years, and they have become my priority.
When I was first diagnosed and for many years afterward, my focus centered on my prognosis and the survival rates for this type of brain cancer, and I wasted precious time. I now realize that my life is too uncertain to worry about a fate I can’t change. With no cure in sight and limited treatment options, at some point my tumors will start to grow, and I’m prepared for that day. And although not every day is a great day for me, every day is a bonus, and I’m grateful.
Focusing on Quality of Life
I’ve transitioned from thinking about how long I might live to how well I want to live. Quality of life has become paramount to me, and in addition to making more time for family and friends, I also make more time for myself. I go golfing almost every weekend and take yoga and tap-dancing classes—yes, even with painful neuropathy in my feet, I won’t give up the joy tap dancing gives me.
In some ways, I’m already defying the odds. I don’t know how long I will live, but I’m determined to make every day count. ■
Ms. Leary lives in Benton City, Washington.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from the survivors interviewed and should be considered anecdotal.