Today would’ve been my mom’s 60th birthday. I started this blog on Mom’s birthday back in 2019. It had been a few months since my diagnosis and I was finally feeling ready to share what was happening. I choose her birthday for my first post because my journey and hers have been so completely intertwined. It seems fitting to close this chapter with an update on my recovery on her birthday too.
Read MoreEleven months ago, I had my stomach removed. I went into my surgery as prepared as I could possibly be. I had months to process the reality of what I was facing, I had been in therapy, I was working with an energy healer, and I was meditating daily. I scoured the CDH1 Facebook group, made new online friends in different stages of recovery and made note of all of their tips and suggestions. I am a researcher by nature; I like to be prepared and in control. By the time I got to the National Institute of Health, I was at peace with my decision, and ready to be rid of this heaviness that had followed me for the whole year and had put my life on pause. November 7, 2019 was a rebirth of sorts – a second chance at a life that I didn’t even know was in danger of being cut short two years ago.
Read MoreWell, at long last, it is finally official. My total gastrectomy is scheduled for November 7. 11/7 sounds like a lucky day – like the Beyoncé song, except exactly the opposite, but whatever. Just let me pretend I’ve got some Beyoncé mojo up my sleeve, ok?
Read MoreIt has been nearly three months since I first shared my story. I really thought that post would be the difficult one, and it would get easier to share updates from that point on. However, I was kind of wrong. It turns out, sharing things that make you feel vulnerable doesn’t immediately get easier.
Read MoreIt’s 10 a.m. on the morning of January 28th and I am elbow deep in the dryer when the phone rings. I have been anxiously awaiting this phone call since Friday afternoon – an entire weekend consumed with wondering why the genetic counselor wanted to set up a follow-up call with me.
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