One of the evil side effects of chemo that no one really talks about...because nausea and neuropathy get ALL the attention; insomnia. Day 2 of 4, and I've slept maybe three hours. While sitting trying to listen to a discussion I start to doze, but the minute I get to our room my mind starts buzzing. I timed my non-naps around topics of interest or participation, but grateful Fred was there to be my second set of ears to fill me in on what I missed!
Aside from the insomnia, I was also in a lot of pain. Honestly, I didn't even realize the pain level until I didn't have access to a HOT shower. Apparently one hot shower a day is enough to relieve my muscle tension, but our hotel shower was lukewarm at best. I have all the oxy and hydros, but nothing for muscle tension. Thankfully my nurse was able to call in a muscle relaxer to a local pharmacy, and seriously save the week!
After picking up my script (and one insane Lyft ride), I returned just in time for the group share. This is where you stand up in front of 150 other attendees and share your story. And this is where the nerves kicked in...public speaking is not my favorite. You guys know how much I hate spiders...well, I'd take a sit down meeting with a spider over public speaking. But as the stories continued I began to realize this is my tribe, they fight - they are strong - they hurt - they cry - they are angry...just like me! The nerves fell away and I simply listened to my tribe.
Usually I would try to prepare something in my head, but I was so enthralled by everyone else's story; by the time my turn came, I was blank. I stood up. I was wearing a hat instead of Pearl (my wig), and it had been itching like crazy all day...so that's the first thing that popped into my head. I took it off. I was bald. And then people started to clap...then they started to stand. And I silently thanked Daddy, for a legacy and story worthy of a standing ovation. For me, ditching the hat was symbolic. I was breaking open and bearing my truest self. If all those before me could bear their souls, I could too! I can't fully recall my words, but I do remember explaining the hurt and heartbreak of having to turn to Fred and tell him he'd have to do it again.
Poor Fred had to follow that show, but as always he is the rock of this relationship. (Clearly, making me the rolls.) He spoke of bringing Daddy into our home, and that although I asked it wasn't even a question - we were going to be the ones to care for and love him through. I am forever proud of the man I married, but it's a special thing to witness his story touch other survivors and caregivers; people that have personally lived similar stories.
From that point on, I never covered my head again (except when outside, because winter). I try looking back. To that Heather that just lost her dad, grieving; for months, she couldn't go a night without reliving his final week. She had given so much of herself, she didn't know what to do when he was gone. And now, the level of selfishness I feel...knowing Fred is giving of himself in the same way. We both needed this release. This welcoming. Into a tribe of people that are fighting to improve and save lives!
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