Mutant Vs Monster: Andi Last’s Tale of Li-Fraumeni Syndrome


My name is Andi Last. That’s my husband Jay Last in the video with me. I’m the mutant, and he’s my warrior.

In March 2015, at the age of 41, I was diagnosed with breast cancer. Not long after, I learned that I have a very rare inherited disorder called Li Fraumeni Syndrome, or LFS, which makes me prone to getting all kinds of different cancers.

In simple terms, we’re all born with two copies of a cancer suppressing gene called TP53, one passed down from each of our parents. In families with LFS, one of those genes is mutated. That’s why some of us call ourselves mutants.

Music, photography and video are things we really enjoy, so doing them was a huge help for both of us in dealing with all of this.

A few months after the worst of the chemo was over, we drove to the desert to photograph Ricardo Breceda’s giant metal sculptures in Borrego Springs, California. The sand serpent really caught our imaginations. While taking photos I said it’d be great to shoot Jay as a knight fighting it with his sword.

He said really I should be fighting it because it reminded him of the monster I’d been dealing with.

I realized he was right, the sculpture is a good analogy for LFS: it’s a massive 350 foot long scary monster with a dragon’s head, a serpent’s body and a rattlesnake tail. It pops up out of the sand and disappears again and you never know where it’s going to show up next.

Li Fraumeni Syndrome is also a massive, scary monster. It can cause many of different kinds of cancer, in kids, adults, and entire families. If you have LFS you might get multiple types of cancer throughout your life – or even at one time.

Since I’m not fighting LFS alone, we decided we would fight the monster together in photos as well. And thus, the Mutant Vs Monster project was born.

Over a few months we put together costumes and did a series of shoots with the sculpture in the desert. What we thought would be a few pictures turned into a much larger project.

It was an expression of our creativity and a way to deal with some pretty lousy circumstances, but it has also turned into a great opportunity to raise awareness and support for LFS.

You can visit http://MutantVsMonster.com to see these photos and read our story. And you can make donations to the LFS Association, and to Living LFS, which is a mutant support organization. And we mutants thank you!

Mutant vs Monster

 

Special Mutant thanks to Andi Last and her husband Jay.  For more of their work check out Lastproductions.net.


Kelilah’s Keys to “Beating” Cancer and other Crap

Kelilah Vardah gives us her thoughts on the Living LFS question:

“Do some of you think you can beat cancer with pure will (and medicine of course).”

Short answer: In a way, yes.

Long answer: Beating Cancer isn’t easy and there is no clear pathway to survival. Some of the happiest and most positive people I’ve known on my cancer journey have died quickly while there is one particularly mean guy that still hangs around. So, it’s complicated. But we’re used to that, right?

I have fought brain cancer for years. I’ve been sent home to die 3 times and I’m still around. GBM can kiss my patootie. I’ve developed osteosarcoma, which can also go hang out with GBM and there’s a mess of other complicated blah blah blah going on too. Here’s what I’ve learned along the way:

1. First and foremost, be honest. Be honest with yourself every moment of every day and be honest with everyone else too. If it’s a crappy day, then admit it’s a crappy day. Don’t happy your way through the crappy, until you admit the crappy exists and then throw that happy stuff right in it’s face until it cries for mercy. But if you just want to sit in the crappy and fully acknowledge it, DO IT. Don’t hide the crappy from others either. If they don’t know today is crappy, they’ll annoy you with inappropriate happy and you may not get the help you need to get through the crappy. I very recently spent an entire weekend curled up on my bed in utter tearful oblivion and I didn’t get up until I had to make room on my bed for more kleenexes. I didn’t hide it and I didn’t let someone try to “fix me out of it” or even attempt to say there was a single bit of non-crappy in that moment. I owned the crappy for a time. I didn’t die from owning it, cause I’m still here.

2. Don’t let crappy rule you. Let the happy in. Deliberately find reasons that life is fantabulous. The little things are awesome for the especially stubborn crappy days. Be it the trees, flowers or birds that float your boat or simply the fact that chemo doesn’t make us turn neon pink with green stripes that makes you feel a slight bit gratefully happier…. find the little things.

3. Make fun of the crappy. The more we laugh about it, at it, and through it, the smaller the crappy becomes and the more powerful we are in the end. If you can’t find a reason to laugh, recruit one of the most annoyingly funny people you can find to help you out in that area or message me. I’ve always got a good story about the antics I’ve had to endure at my latest doctor’s appointments, or out in town with Mom (I’ll even tell you about the juicy date experience).

4. Remember that cancer exists in our lives but it isn’t our lives. Whether we’re on surveillance mode or we’re full on 007… it is merely existing in our lives. It can’t destroy all that is you, it can only affect what route you take. In the end, make sure that what you leave behind is a wonderful array of stories and memories for those who are left to carry on in life. Make sure to make room for all the stuff they’ll think about, reflect on, laugh over and carry with them into the generations to come. You never know, you may live to a ripe old age and you’ll still have to live in a way that makes your legacy remarkable. The joy in knowing that we are mutants is that we are aware of how much every day counts so much more profoundly than others, so we get a head start on the whole “make it count, make it matter, make it last” side of our story.

5. When you look at what you have around you, you’ll find more will to live than if you think about what isn’t there, what won’t be there, what we need to do and whether we will or won’t be able to get to this or that goal. Appreciate the NOW because that’s where you are. You aren’t in the past and you aren’t in the future and neither is your child, your family members, your friends or those whom you have yet to meet. You are here now. I’m so grateful for that because it is NOW that we get to meet and that may not last but NOW is where we shape tomorrow. Yes, plan for tomorrow but make sure that your NOW makes tomorrow something worth experiencing.

6. Medicine is vital and progress is being made in treatments. Of course it is important but I have one doctor who has never given up on me and has made a great impact in my life. You see, he won’t take anyone into treatment or surgery unless he’s certain that they actually want to live. That they believe they’re going to get a positive result even if it’s not the best result. I didn’t understand that at first but I do now. I learned to tell myself I was going to live and because of that, I’ve had less side effects and less distress and… drumroll… I’ve lived longer with GBM than most who have the same type of tumor. Did it come back? YEP. What did I do? Went back into chemo and bought another wig.

Do I cry? YOU BET…

Do I let people know when it’s a no-good-crappy-horrible-bad day? YOU BET

Do I wonder if I’m going to make it much longer? UH HUH!

I get up every day and make myself move forward. Not because I think I’ll live forever but because I know that today is a day to be honest, to fight with truth, to never let my cancer lie to me and tell me it rules my life, to believe that miracles are still possible… wishes and prayers are valid… and laughter is still one of the best medicines ever.

I found people who won’t let me give up but also don’t push too much, who aren’t going to let me fester in my misery but will refuse to let me ignore it.

And when I couldn’t take the misery of things any more, I grabbed a pile of depends and went through the hospital telling people it was “time for a change”… Ok, so security caught up with me but now all the nurses know me by name grin emoticon.

Good luck, my fellow mutant. Muster your will, gather your wits and join those of us who may be on a sinking ship but we aren’t going down without a heck of a fight and a few good songs about our adventures to pass on to the next generation!

Kelilah VerdahKelilah Vardah is a several time cancer survivor and recently diagnosed mutant and we thank her for letting us publish her inspirational and real thoughts.