Fannie’s recent post on the Living LFS blog reminded me of my own analogy. A member of our private support group posted a fun thread of “you know you’re an LFS mutant when…” and this was one of my answers:
When people say, “Life is short for everyone. I could get hit by a bus tomorrow.” and your response is, “Now imagine that bus has already hit you and your family members multiple times and it’s chasing you across town…. Forever.”
That’s what it’s like to live with Li-Fraumeni Syndrome.
You make the most of the times when you’ve ditched the bus for a while.
People with a new Li-Fraumeni Syndrome diagnosis regularly join our private Facebook group feeling overwhelmed, fearful, scared and sad, looking for support. And no wonder — being given such seemingly hopeless news is emotionally traumatic. My first post to the support group, 9 days after my LFS diagnosis, was completely…
In the wee hours of December 1, 2009, I took myself to the emergency room doubled over in abdominal pain: gallstones. I was scheduled to have my gall bladder removed the next day. The laparoscopic surgery would be minimally invasive, just two tiny, camera-guided incisions, one in my belly button…
I looked up from the drum kit and immediately thought I had a brain tumor.
I was seeing double. I put a hand over one eye, then the other. Only the vision in my left eye was doubled, my right eye vision was the usual lousy.
I am a mutant. Unlike the X-Men, I don’t have super powers. In fact, unless gene editing becomes commonplace in the next few years, I am likely to die early as a result of my genetic mutation.
Unpleasant truths, but true nonetheless.
Coworker: Welcome back! How was your trip? Where did you go?
Me: Actually the nonprofit I’m involved in was an exhibitor at a cancer conference in Toronto!
Coworker: Oh, what kind of cancer?
Me: (Give her the short version about LFS and my family history)
Coworker: Oh that sounds just…
LFS can be isolating in everyday life. Being able to spend time at the LFS Symposium in Toronto Apr 25–29, with so many people who understand and accept each other without explanation, was an overwhelming experience — hearing stories similar to your own, knowing the same fears and anxieties, feeling the same huge hopes. For a first timer like me, these were surprising comforts. Trish from Living LFS said, “Support organizations are a vital part of cancer treatment. We treat the spirit.” I had no idea how true this was until Toronto. I am so grateful to Living LFS for creating the community so many of us need, and for making it possible for us to spend time with together, both online and in person.