It was scarier than I thought it would be to leave the safe hallways of what had been my home for the past 37 days. I wouldn’t have nurses, who I had come to call my friends and second family, checking in on me or just stopping by to say hi. I wouldn’t have direct access to doctors, and if I spiked a fever would need to travel over an hour back to Boston to get to my team.
But my excitement for feeling the sun on my face pushed away my fear and I finally pushed open the second set of airlock doors and rode the elevator down to the lobby with my mom for the first time since being admitted.
In the first few days there were a lot of things we hadn’t thought about, like the fact that I hadn’t climbed stairs in over a month, or how much car rides suck when you are tired from being at the hospital all day, or how everything is impossibly heavy and for some reason refuses to be opened or lifted by me. Besides the fact that I was thrilled to roam the open streets again and eat non-hospital food, there was a lot of adjusting I had to get used to.
For instance, for the first week back I had to continue to give myself a shot in the belly. Something I thought I would NEVER be able to do, something I freaked out about Thursday before going home – I do now. It’s just a new routine – wake up, stick self with a needle, take a million pills etc. The biggest adjustment was with my parents, though my stay was only for a week it was still weird being back in their care, and being constantly asked how I’m doing, if this was okay, if that was okay, being helped up the stairs without asking – basically being treated like I couldn’t do anything for myself.
I have Leukemia, that doesn’t mean I can’t function.
It was aggravating even though I knew it was coming from a concerned place – after all my immune system is weaker than newborns, I’m pretty fragile. But we all adjusted. And I constantly reminded them I wanted my freedom back, not to lose it again. It didn’t help that my first week out I got pneumonia and a fever – but those things are to be expected when people take away the tools to fight them right?