We can change this world with words like "love" and "freedom."


This weekend is my last chance to pretend to be someone I’m not–a healthy person. On Monday morning, I have my first round of tests in preparation for my surgery on March 9. We’re taking our dogs to stay with friends, and our cats will stay here in the house with my mom checking in on them. I’m looking forward to being away, but not so much to being poked and prodded and investigated. Since the word on December 27 that this is indeed cancer, I have had very few symptoms except an unending tiredness (and the aforementioned ER visit). So I can almost convince myself most of the time that there’s really nothing wrong with me.

The urologists will also determine whether to do a Mitrofanoff procedure which will mean that I will use a catheter to empty my bladder to take the stress off my remaining kidney (and the part that is left of the one with the cancer). It is another major surgery and one that will change my life forever. Spina bifida has affected my bladder and bowel control my whole life, but this will be something I can’t imagine getting used to.

I’m also dealing with the possibility of reverting to using a power wheelchair or scooter. The loss of balance and weakness I’ve experienced scare me, and I want to hang on to as much of my independence as possible. I want to live my life creating my place in the world and helping others find theirs too. I’m just getting started.

It’s dark now, but the sun will come up tomorrow and the next day and the day after that. That may be all I know for sure right now, but I’m holding on to it.

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