Living With a Brain Tumor

By: Carl Berkowitz, TCCC Volunteer

Kim Leary is an oncology RN clinical nurse, who lives with a rare type of brain tumor that affects the glia, or supportive tissue, of the brain. Given her extensive medical knowledge and first-person experience, one might ask why she is such a strong booster of the Tri-Cities Cancer Center’s Brain Tumor Support Group. Her answer to this question is straightforward. “Because learning about the experiences of others and being able to share my personal experiences are a huge benefit for all participants in our group.”

The TCCC Brain Tumor Support Group
Kim notes a number of the issues and concerns of brain tumor patients are not strictly medical and that many must learn to live with disabilities which are not obvious to friends and family. Skills previously taken for granted, such as hand coordination, finding the right word when speaking or the ability to recognize faces can be lost. And even learning how to respond to well-meaning observations such as ‘you look fine’ when in fact, the patient doesn’t feel fine, can be a challenge. Being with others who have dealt with these and other concerns is an important benefit of participation in the group.

While all cancers are unique, brain tumors, both malignant and benign, are special in that they can affect all parts of a patient’s life by interfering with basic cognitive skills. “My short term memory is not what it was before the glioma developed. Words and names frequently escape me, and I have to be more careful about not misplacing things.”

Kim and other support group participants bring together a variety of issues from a variety of caregivers. As a result, a multitude of concerns can be addressed, often with different approaches to common problems. Participants can contrast the location of their tumors with changes in their personality. Proposed treatments or the results from clinical studies are frequent topics of discussion. But less technical issues are also fair game, including (for example) the challenges of getting behind the wheel of a car after a 6 month hiatus, or the wisdom of ketogenic diets. Even ‘alternative’ medical procedures, such as acupuncture, have been discussed, with both advocates and skeptics having their say.

All of this is done under the guidance of TCCC Chaplain Margaret Ley, about whom Kim says “We all love Margaret; she knows exactly what to say, how to keep discussions going and is both empathetic and a good listener.” With the tone of meetings set by Margaret, all participants can relate to each other regardless of what kind of tumor they have or what stage they are at. “Margaret brings out the commonality of all participants.”

Kim’s advice to patients (and their friends!)
Family and friends were vital in helping Kim get through her medical exams, surgery, radiation therapy, and the many changes that come with a brain tumor. Having a special friend was also critical. Kim talks about how her companion and fellow dance enthusiast Mary Albin “…helped me more than I can say. She’d send me texts that made me smile or laugh all the time.” The lesson here for patients is to spend time with friends and keep up social interactions. And the lesson for the rest of us is to stay in contact with patients, if not in person, then with text messages, notes or phone calls.

A second message Kim likes to share with the support group is ‘Carpe diem’ … seize the day. “I don’t know what the future holds but I do know I have today to live it”, and this is exactly what Kim does. When not working as a nurse on clinical trials, she participates in a wide range of community activities including classes in Zumba, yoga/tai chi and Pilates (all of which help her coordination). Socializing with friends is also a big part of her life. But her main passion since the age of 5 is tap dancing, something she was not going to stop after her diagnosis; she’s now a 12-year participant in the Tri-City Tappers, having performed throughout our community for both public and private events.

“I know the statistics for my tumor and for others. But these are statistics and don’t apply to an individual. So you don’t really know what will happen. I think the best way to proceed is simply to enjoy today and the present moment. “

For more information…
To learn more about Kim and her amazing journey, come by the Brain Tumor Support Group on the third Thursday of each month at 10:00am at the Cancer Center. Call (509) 737-3427 for more information. Reservations are not necessary.

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