LFS is hard to explain to the average person out there, who simply cannot fathom the things that we face and are required to consider with a hereditary cancer syndrome. However, there is a fantastic private group of over 300 mutants from all over the world on Facebook who do understand. Mention a challenge that you are having there, and someone will offer their intimate experience and insight, laced with kindness and comfort, because they truly understand the bizarre otherworld that is living with LFS.
Oftentimes, they will make you laugh, inappropriately and outrageously about it. This does not indicate any lack of compassion, which is found in abundance among mutants.
We imagine that there is research out there on humor as a coping mechanism. We have no idea of how it impacts outcomes, but can attest to its impact on living… and we are certainly living the mutant life, with a fair amount of sarcasm and snark.
Living LFS incorporated as an official organization and we are in the process of filing our non-profit status. But, the majority of the "work" we are doing is in this private organic group, a safe place in a digital land for mutants to vent and to share and, believe it or not, to laugh.
Last week, a thread was started that began “You might have LFS if…” sort of a blend of Jeff Foxworthy and David Letterman, ummm… well maybe if they met at a bar across the street from a cancer center. Many thanks go out to the mutants who generously allow us to share their words:
You might have LFS if…
10. you have MRIs as frequently as most people have dental cleanings.
9. you correct your doctor who mispronounces “Li-Fraumeni” then you go on to educate them about what it is.
8. you get assigned the room B9 in the ER, and you take it as a good omen!
7. you have more doctors in your contact list than actual friends.
6. you have heard the following more than once “Is that what Angelina Jolie has?” (and you think to yourself “I wish!”)
5. you evaluate how committed your doc is to your relationship based on whether he gives you his reception, direct office line or cell phone number.
4. when filling out medical forms and they ask you to list surgeries or medications, you write “see attached” and you always bring copies of these excel spreadsheets with you to attach.
3. you are excited for your very first tattoo…a pair of nipples.
2. you know more cancer medical terminology than a first year med student.
1. the word ‘mutant’ conjures up a warm fuzzy feeling.
However, the truest indication that you might be Living LFS is:
...if you laughed at any(or all) of these