When my phone rang, I wasn't prepared for the news I was about to receive.
Four days earlier, Kurt was driving our daughter Georgia home from a tournament in Canada. He needed to pull over because he experienced sudden, violent spinning sensations. He made phone calls to myself and to my brother and despite our advice, drove to the community hospital in Cornwall Ontario. After blood work and tests, Doctors concluded that he was experiencing vertigo, gave him some illustrations of exercises that he could do and then recommended he not drive for a couple of hours. (Luckily, a teammate and parent were selflessly able to escort the two and drive them home). When they returned, I knew something wasn't right. Kurt was disoriented. I described him as moving through our house like a 96 year-old drunk man. Although we had heard how awful vertigo could be, It had to be more; that couldn't be it. Something was neurologically wrong and I was nervous. He was unsure of where his body was in space and he felt awful. We followed up with our general practitioner's office; they also concluded that it was most likely vertigo and gave us referrals for a visit to his neurologist and PT as well as some prescriptions. The neurologist had Kurt perform some balancing and eye tracking exercises. He couldn't walk a straight line. The neurologist, concluding still that it was most likely vertigo, expedited a referral for an MRI (though while unlikely) was referred 'just in case' to rule out a stroke. She noticed how unhealthy he looked. He had lost weight and hadn't been sleeping regularly. "You need to take care of yourself," she said. Kurt had an MRI done a little more than a year earlier and there was NOTHING on it... I sneak away from our table to answer Kurt's phone call. "They found a mass on my brain," He said, and as I crumpled in the entrance way of the restaurant, I thought to myself, "Everything is about to change." With the help of my brother, I was able to race to the hospital, while he picked up Georgia from hockey practice. My son, Spencer, had earlier escorted Kurt to the MRI, and when they found the tumor, the two were rushed to the emergency room. Poor Spencer. There, I found Kurt and my son, and despite his insisting on staying, I made Spencer walk home with me. I packed a bag and headed back to the hospital. The emergency room was, of course, unusually busy and we waited for quite some time. I snuggled next to Kurt and we cried and laughed and joked and cried. He had two masses; one quite large and the other small and too deep and within too much vital brain business for removal. The neurological surgeon, despite a very busy day in surgery, took the time to go over the images and describe how the surgery would go and what to expect. We named the tumors Fluffy and Snuggles. Then we waited. We waited with a flood of friends and family that crammed into Kurt's tiny hospital room from before visiting hours until well-past. The outpouring of love was wonderful, but we were exhausted. My fingers hurt from the endless texts and updates I needed to send. Kurt was so strong the day of the surgery. He was ready. He was in a good place. We have lived a wonderful life together full of love and adventure. We were raising two amazing children. We were okay. Everything would be okay. About six hours later, the surgeon calls me out of the waiting room. I could tell by his expression, that the news I would receive wasn't going to be the news I wanted to hear. They got the big tumor, but it was glioblastoma. The tumor would be back. It was possible that Kurt had 12-18 months. Six days later, he was home. Six days later we had a finite timeline and an overwhelming list of things to do. Being in the hospital helped to keep all of this surreal, and now that he's home it is all just, well, sad. We hurt. We are raw. As I write this, our children don't yet know just how short our time with their father will be. Before you read this, they will. Will they be angry with us for waiting, or just angry? Will they give themselves permission to feel the myriad of feelings that Kurt and I are experiencing? How will they keep moving forward? How will we facilitate that? What coping strategies will they use to remain 'normal?' Maybe they will share their thoughts with you. I hope that they do...
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AuthorKurt, Margo, Georgia and Spencer share their thoughts about living with and loving someone with brain cancer. Archives
April 2019
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