My husband, Chris, was diagnosed with an anaplastic astrocytoma in February of 2015. The diagnosis was, of course, devastating, and care for him began so swiftly. After his resection, healing from surgery, six weeks of radiation treatment, and Temodar, we were then on the plan of standard of care for a year. His neurology doctor said that I should immediately look for a support team to come alongside me with this challenging diagnosis.
I found the Brain Tumor Network – and it has certainly been a lifeline to me! I called, and on the other end of the phone was Karen Greenan, my patient navigator. She and the other support team members are tremendous listeners and encouragers. This diagnosis was so new and scary to me, I simply didn’t know what to do. I wanted to take care of my husband and understand his diagnosis entirely. Karen became my brain tumor navigator. We pulled through the ups and downs of my husband’s treatment. Unfortunately, within eleven months, he was facing a recurrence.
I contacted Karen to help us locate a clinical trial to assist Chris. Karen was amazing!! She sifted through hundreds and hundreds of clinical trials on our behalf to find those that were most appropriate at the time. We had specific inclusion/exclusion criteria to meet, and without her help, I truly would have been overwhelmed. As I say – they are a lifeline of hope! We found a clinical trial that my husband was eligible for.
I tear up thinking about this time of recovery. My husband was having an extremely difficult time with recovery for the first four weeks, and I constantly called on Karen for help. There was one morning in particular that my husband just could not receive my words of comfort, so I put Karen on the phone. With the phone right next to his ear, she brought him consolation through her encouraging words. She reinforced to him that recovery takes time and what he is experiencing is all part of the normal healing process. Somehow, my husband received her words, and we moved forward.
Finding support through the Brain Tumor Network early on was pivotal for me as the caregiver. Thank you for all the help from your organization.