Thank you so much to the many people who reached out to me after my last post, in which I shared that I had breast cancer. I’m sorry for not replying to everyone. There are emails sitting in my Inbox, which I have been meaning to reply to for months. I’ve really had an aversion to this whole cancer thing. I just don’t even want to THINK about it.
Of course, today is the start of Breast Cancer Awareness Month, so I will definitely be thinking about it. But there are just so many emotions that come up. Mostly, I feel grateful that I’m still here. I also feel sadness because the last year was REALLY difficult, and my body was altered in so many ways. I’m still dealing with the side effects from surgery, chemo, and a drug that I will be taking every morning for the next 10 years. I have a swollen arm (possible lymphedema), aching joints, and pain in my feet. My skin has had a horrible reaction to everything too. I thought my acne years were behind me! But then I feel guilty for complaining because at least I’m here on planet earth, and that’s all I wanted in the first place. My emotions surrounding cancer are complicated, and only more writing will help tease them out.
But, for now, I will tell you about our next adventure. Emmy is having kidney surgery next Monday, October 7! GAHHHHH!!! I was telling my husband, Dan, that our life is TRULY a soap opera. We’ve had more “adventures” than we’d care to mention.
Long story short: We did an MRI to check Emmy’s kidneys and discovered that one of them is barely working anymore. From what I understand, our kidneys are supposed to be working at 50/50. Emmy’s kidneys are at 83/17. We have no idea what happened or when it happened, but there APPEARS to be an obstruction. She had an ultrasound done in 2013 which revealed 2 perfectly healthy kidneys.
That was right before her heart surgery…after which she had 2 cardiac arrests and was on a life support machine for a week. Could that have caused the obstruction? No one knows…
The surgeon would like to try and repair the obstruction, which should keep her kidney working at 17%. Unfortunately, the kidney will not restore itself, but we’re trying to preserve the little function that she still has.
Emmy has not had any symptoms and is not in any pain. Her good kidney is picking up all of the slack, so her blood work has always been spot on.
You may know that anesthesia is a huge concern for people with Williams syndrome. (You definitely know this if you’re a parent of a child with Williams syndrome because every time your child has to go for anesthesia, it’s a BIG DEAL.) So while I don’t like surgeries anyway (and, boy, have we had our fair share as a family!!), it’s even more nerve-wracking when the person on the operating table has Williams syndrome.
So now we sit in anticipation of next week.
Speaking of anticipation, this surgery was actually scheduled for September 9th. So we already went through a whole rollercoaster of emotions on September 8th as we drove 2 hours to the hotel where we were due to spend the night. We got a call when we were literally a block away from the hotel. The surgeon had an emergency HIMSELF and was in the hospital. Surgery canceled. When I got off the phone and told Emmy the news, she responded, “Oh, I’m so embarrassed! I did all of that crying for nothing!”
We drove back home in shock, though I also felt a huge sense of relief. We got a call a couple days later saying the surgeon is ok now and that surgery would be rescheduled for October 7.
October is Emmy’s favorite month because it has her favorite holiday — HALLOWEEN!! This kid loves Halloween like no one else I’ve known. She thinks about Halloween 365 days a year. We don’t really know how quickly Emmy will be running around after this surgery, but I am HOPING and PRAYING that she will be able to enjoy trick-or-treating as much as she always does.
I’m also hoping and praying that I keep mentally sane on the day of her surgery. Sitting in the waiting room with a bundle of nerves is something I have done many times now, and it’s very, very challenging. Until then…anticipation…
Here’s a picture of the 5 of us at a Breast Cancer Walk/Run earlier this year. Through it all, we keep on truckin’!