Now that I have a little more time on my hands, I’m going through some older blog postings that I never published. This one should have been the first on my list. It isn’t just for grown ups. I found myself as the advocate when Sophia when through her initial complex febrile seizures at the age of 2 1/2. They nearly discharged us from the ER, before she had a second seizure (stopped breathing) and then third seizure (cleared CAT scans). The next day in the pediatric neurology unit, with 30 wires stuck to her head and on EKG all night (all clear, no signs of epilepsy), they nearly discharged her again, until I forced the doctor to look at her motor skills. She couldn’t grab things out of my hands, sit up on her own, and since she was imprisoned in a caged crib no one realized that she could no longer stand up. It took her three more days to learn how to walk again. As a two year old, she couldn’t voice her needs, say what was wrong, or even comprehend what was happening. I, as her mother and advocate, had to speak for her. Little did I realize, exactly one year later, I would need an advocate to speak for me. I wrote this during my third round of chemo, in December 2011. As I’m approaching the one year mark of starting my chemo treatment, I still to this day don’t think I would have gotten through it had it not been for my advocate…….
Along with the adage, you hear what you want to hear, your advocate is there to fill in the blanks, and also to be your back up. For me it is Graham, and there couldn’t be anyone better. As much as you think that I fight for myself, Graham is my warrior right alongside me, during the entire battle. He is there to ask questions, ones that we prepare but I somehow can’t get past my lips. He is there to keep me present. There to hear things, phrases, terms, orders of procedures. There to understand the surgery, the pain, the healing. There for me, because even though I could do it if I had to, no should go through this alone.
It was most evident when my oncologist set my chemo start date, and gave me my prescriptions for anti-nausea and codeine for pain. Imagine, you are preparing your mind and body as best as you know how a full week before you have poison drip and injected into your system over the course of several hours. Not something you’re necessarily looking forward to, but definitely something that you’re building up to. When the day arrives, the oncologist, with her assistant nearby, says, “Did you take your steroids yesterday and this morning?” Um, what? “You didn’t give me any steroids,” I reply. “Of course I gave you steroids,” she answers, actually starting to make me feel as if I had made the error. I start to second guess myself. Did she give me a prescription for steroids and I forgot to get it filled, pick it up, didn’t take them? But before I could utter another word, there was Graham. “No, not once did you ever mention steroids, nor did you provide a prescription for steroids.” She was caught. And before she could have a chance to turn me away to delay the start of the poison drip, he adds, “You can’t turn her away today.” Yeah, that’s right! “I have nothing to do all day so take as long as you need to figure it out.” Now in hindsight, I probably should have waited, after hearing horror stories of the effect that that the one chemo drug has on people while in the chair (burning of the skin, severe spinal pain and possible permanent damage, and more) that the steroids are supposed to protect you from. Then again, it’s probably better that I didn’t know. Mind over body is an incredible force, especially when you have your advocate standing beside you along the way.
And there are just so many other things that happen throughout all of this. Having your advocate there with you helps you keep on track. Not only is Graham my fact checker with the doctors, but he is also my coach, pushing me along the way. And by pushing, I mean telling me to get my ass up and stretch my body. He makes sure I’m on top of my medicines, appointments, doing my necessary exercises. Tough love isn’t for everyone, but he definitely knows it’s exactly what I need to stay ahead of this. He is what makes me able to get through all of this. I knew before that he was my best friend, my husband, but never advocate. Another checked box next to the mountain man that I love with all my heart. Seventeen years together and counting…..