"We must be brave."
She was diagnosed with Stage 4 Gliosarcoma in September of 2014, on her 62nd birthday. Gliosarcoma is a rare and aggressive form of brain cancer with a poor prognosis. There weren't really warnings and everything changed quickly and forever. A seemingly healthy, boisterous, spirited woman, it was completely unexpected. She passed out one day and it turns out it was a tumor. "We must be brave" are the words of my 4-year old niece. There's a beauty and truth in the innocence of childhood. I share this with you because it is a part of me. It affects my soul.
She underwent surgery to remove as much of the tumor as they could. These types of tumors are hard to fight though. Essentially, they have tentacles that permeate the brain and they're quick to come back. They said she had 12-14 months left. She didn't cry, but we did. She's been so brave.
For 6 weeks she did combined radiation/oral chemotherapy. Radiation involves lying on a table encapsulated by a mold of your upper body so that you cannot move even a centimeter as the laser blasts away. She continued another 4 months of just chemo until they suggested another 6 months after that because she wasn't having severe side effects and they figured it could only help. She's an incredibly strong and determined woman and the chemo seemed like a piece of cake. That's not what her body tells us though.
It's extremely hard to see anyone go through this but it breaks your heart to watch someone you love, someone who has given every last ounce of their being for others and has never been weak face this struggle. My Ami, my mother. It's been difficult accepting that she is not okay and that there is little that can be done. There is so much uncertainty. At the same time there are those things we know.
17 months after diagnosis brings us to January 2016. That's 3 months longer than what the doctors said to expect. Hope starts to creep in and since she doesn't outwardly appear sick you've almost forgotten. At the end of the month during a standard MRI, they find a new tumor. Same type, different location, unable to perform surgery. She's been tired for a few months but she's been on chemo so it seemed expected. She's seemed generally normal until now. Then within a matter of weeks she begins to change. Short term memory is suffering, she becomes more easily agitated and all of a sudden she's aged years. This is the tumor taking its toll on her brain.
Luckily she is accepted into a Tocagen clinical trial. We still don't know what this ultimately means, but during her biopsy they injected her brain with a virus that is supposed to keep the tumor from growing or spreading. She takes a daily pill to combat the tumor in place of traditional chemo.
Until it happens to someone close to you it's hard to truly feel how scary and fucked up and mysterious cancer is. I understood it with my mind before, but I didn't comprehend the intricacies that rip your heart apart. I still can't imagine what it feels like to be the patient or the spouse. Their 40th wedding anniversary is in March. As a daughter, it pains me to see her go through this. I feel sad that there will soon come a day that I will be without her. But I feel a greater pain that she must endure what feels so unfair. Something that is physically and mentally destroying her. Something that will turn her into what she feared most. I'm sad for my father. I'm sad for anyone in the world that must lose someone they love to disease or any other force.
Nothing can make it better or make it hurt less, but I can choose understanding and acceptance. My perspective changes. I know the one thing I can control is my mindset. I am grateful for all the good years and for all the love. I am grateful. I must take something positive from this. I must not let this tear me apart. It's important to love and find value in one's being. It's important not to be scared, not to let fear hold you back. Enjoy yourself, enjoy others and do what feels right. The time is never right, but at least we have good times and love. We do what we can.