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  • glossectomygirl


Thursday night set me back on my heels. I was gaining confidence and feeling good about progress. Setbacks are to be expected, i get it, i know.

I have a lot of mucus in my mouth. So i was spitting some out and there was blood. I think there will always be ptsd for all of us with blood from the mouth after my initial exorcist reenactment. The girls immediate sprung into action. Ela calling my on call surgical team, Siena calling 911. Both packing my essentials while i seemingly moved in slow motion getting my jacket on. We went downstairs and met the fire department. I sat on the back of the truck while they took my vitals and Siena rattled off my medical history. The ambulance arrived. Ela still on hold with on call line. I went to step up into it, not thinking, using my bad leg and it swiftly collapsing under me - the EMT caught me. We made our way across the city to a dingy crowded ER with homeless strewn on stretchers in the hall. This is where our team had told us to come in this event.

I didn't realize how completely stressed out i was until the ENT from our team came through the door. I reflexively reached my arms out to him and felt my whole body start to relax. Someone who knew about my unique condition, someone who was actually in my surgery and new my case! The other doctors were blank at Siena's use of terminology. The respiratory woman brought in a whole cadre of supplies for someone with a typical tracheostomy rather than my laryngectomy. I sat with my text to talk app slowly responding. Increasingly aware of how poor my abilities to communicate, to advocate for myself really are. Terrified that they would make me stay the night at this hospital and more terrified still that they wouldn't let my daughters stay with me.

Time played tricks, but at last we were given the all clear and on our way in an uber with (a plastic shield between us) the windows down and cold air engulfing us. The night still stretched on as the girls were up every 30 minutes checking on me and my sleep was shallow.

Listen, it ended as well as we could hope. And I know that i will make progress and get stronger and have other setbacks and learn to communicate more smoothly. But it rather puts you in your place. Reminds me that I'm only three weeks out from a really major surgery. That this is a slow game.

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