Thursday, May 10, 2018

I've traveled, some.

I've gotten an education.

I've had my heart broken.

I've been told I wasn't good enough.

I've felt I wasn't good enough.

Then I did better.

Then I did more.

I created 4 humans. 4. humans.

I've kept them alive until now. NO small feat.

I've given my heart to another and had it completely broken.

I've had someone help me put the pieces together.

I've put many pieces back myself.

I've been told to just shove the pieces in, enough is enough.

I've had many close friends who listened over and over while each piece was put back.

I've done my best.

I've learned sometimes your best just isn't good enough.

And then I've had someone hug me so not only all the pieces stuck back together,

And In that moment it was all good enough.

More than that, it is the best.

Monday, May 7, 2018

April with Team Mallory

I thought I'd do a quick picture update, then 150+ pictures...2 iphone slideshow failed attempts and a computer crash later- here we are. 

April was amazing, busy, wonderful. I can not express how proud I am of my minis. From donating birthday money to St. Baldrick's, to Lily giving almost every class at school presentations on Childhood Cancer and the need to fund research, to the actual bald. Most days I feel like I'm failing miserably- then these bald heads remind me we are doing something right. We can't control circumstances, we can control how we respond to them. 

I am humbled, honored and speechless at the tremendous support we've received this month. From donations, to fundraisers, to sharing all the posts, to wonderful t-shirts, lovingly made by friends(Snarky Cancer is the best), I so appreciate every little and BIG contribution to Team Mallory. I am so grateful for your friendship, love and time. Friends are family that you've chosen, thank you for choosing us. 

Phil and I ventured to Toronto for a long weekend LFS conference. It was the most mutant bang for our buck! There were lots of friends, old friends, new friends, it did my heart good to reconnect in human form. There were so many people I needed to hug, repeatedly. So many who don't like to be touched, who put up with me. I was not on my normal scientific fangirl game, but it was so encouraging to see the LFS community together- hashing away at this mutant p53 problem.  And there were so many pictures I didn't take, friends I didn't get to hug. Plans will be made to rectify this. ***Phil cringes and considers who will employ stage 4 cancer mom to finance this***

As for Phil. He is my lobstah. My best friend. It's been a long haul and he's always supported my need to be a professional volunteer. Which often means his being a professional volunteer and best friend, husband, dad status. None of this would be possible without him. Read that as you will....He is the best person I know. Now on to May- May the odds ever be in our favor!
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Thursday, May 3, 2018

The Meaning of Mutant.

I am a MUTANT. But guess what? So are YOU! neener neener neener.

mu·tant  ˈmyo͞otnt/


1. 1.
resulting from or showing the effect of mutation.


1. 1.
a mutant form.

Merriam Webster Dictionary


: of, relating to, or produced by mutation

OXFORD Dictionary


Resulting from or showing the effect of mutation.
‘a mutant gene’


A mutant form.
‘frequently only a small percentage of the offspring of mutants resemble their parents’

Cambridge Dictionary
an organism that is different from others of its type because of a permanent change in its genes:
These mutants lack a vital protein which gives them immunity to the disease.
This mutant gene is thought to cause cancer.
figurative humorous I'm convinced he's a mutant - he's not at all like the rest of our family!

disapproving an unpleasant and frightening thing:
The result of these experiments will be a nightmarish world filled with two-headed monsters and other mutants.

So. Well those are the definitions of mutant from, you know, reliable sources. Because I'm just Jen. Me. The culmination of my experiences(many "highly associated" with my mutation in the TP53 tumor suppressor gene). AKA- LFS- Li-Fraumeni Syndrome. 

My family deals with hardship through laughter. Dark. Morbid. Hysterical. It's an acquired taste. It took Phil awhile. Many of my close girlfriends are forever scarred(remember scars are BEAUTIFUL- they show the battles you've won) by interacting with my extended family. Those who choose to keep me around- well are now family. Friends are family you choose. My mutant family is my collection of weirdos who happen to share the same mutation and snarky need to swear, I mean live life to the fullest. 

Words are precious. A single word can change the meaning of a sentence, the light in someone's dreams, how you perceive the world. Words like: cancer, scars, mutant. 
You have: CANCER. Your scars are HORRIBLE. I AM A MUTANT!

Newsflash- we are all mutants. Our DNA mutates over time to adapt to changes. Not all mutations are BAD. SO declaring I AM MUTANT, HEAR ME ROAR- is kinda like saying- hey check it out, the sky is blue. When your precious offspring toddles over and asks you WHY the sky is blue- well that's where shit gets real. My kids are not offended by the word, but I am also kinda shocked by what does or doesn't offend kids these days. Get off my lawn???

There are many many many mutations. Caused by many many many things. Not all are bad. Some are very very bad and contraindicated for this whole living thing we seem to enjoy- mostly. There are so so so many p53 mutations. There are so so so many OTHER mutations. We cannot predict the pattern of cancer or if these superior(in my opinion) mutants, will get cancer at all. The data pretty much says we will. I used to crave data. Now I say fuck it- I am not a number. BUT- do not interpret this to mean data collection is not important- because it IS. Research is so very important. Yet so many times, the researchers find solutions in the rare- the zebras, the unicorns. We are the rare of cancers. Half of all cancers have p53 mutations. We just happen to have one of these mutations in ALL of our cells. We are the key to solving over HALF of the cancer riddle. If we can LIVE long enough to get there. We are living LFS. 

There has been some dissent over the use of MUTANT. Someone compared it to using the N-word. As the less spectacular and whiter half of an interracial relationship providing interracial offspring- I cannot even go there. Because guess what- when I type- N-word, you know what word I mean. Now if I call a human that word- well that's rude and awful and despicable and sets decency back decades. Now if Oprah, Jay-Z, or Kevin Hart use the N word, well that is up to them. I can't get my kids to do dishes- I cannot possibly solve an issue like this in my blog. BUT that being said- no comparison- a lively band of mutants to generations of oppression. It's a word. You can or cannot use it to identify yourself if you feel it may or may not identify you. I've found that the merry band of mutants who identify with this M- word are my tribe. Their approach to cancering and life in general are very similar to mine. 

So- I polled my mutant friends and non p53 mutant friends on their associations of the word MUTANT. Mind you- I am an acquired taste and this is completely absolutely and totally biased. These are my people. And this is their voice. Words are what they mean to you. If they are empowering, embrace them. If they offend some, respect that. But always, always, always BE YOU. Mutations and all. 

What does the word MUTANT mean to you? 

-   Super awesome
  • A family that I love and adore
  • Not wild type
  • Containing novel genetic information not inherited from parents
  • The X-men  x 10
  • someone who has a mutation
  • Pure love
  • Baddest form of badassery ever. 
  • I am of course familiar with the word (Teenager Mutant Ninja Turtles!!). I guess I would say it is a being (animal, human) that has developed abnormally as a result of an external influence. But I don't think I have ever used the word. It seems like a very 80s word used in fiction.
  • I am in a family of mutants so family reunion to me.
  • Love
  • Before i used to think X Men 😂... now I think mutant means some of the kindest, most compassionate, loving, admirable people I’ve ever met! Beautiful souls that’s what it means ❤️
  • Inner Strength, resilience, friendship and understanding
  • Dont want to crush into your positive vibes. Anyway...most time being a mutant means separation for me, and loneliness. The 10 Minutes a day virtually in Facebook for sure make a difference! But in real life, it makes me feel very lonely...
  • Teenage Mutant Ninja Turtles
  • I kind of think of "mutant" as normal, but the word tends to shock people. It's more acceptable to discuss genetic abnormalities by saying, "I have this mutation," rather than to say, "I am a mutant." Maybe it just sounds kind of aggressive or attention-seeking - something people say for the shock or laugh value? Mutation happens all the time, and I would guess that most people have at least some form of genetic mutation. I know I do... #ProthrombinGeneMutation
  • Courageous badass super hero
  • The key to the future of humanity 
  • Friendship, connections, scans, fear, love, science, hopefully awesome super powers!
  • A tribe trying to withstand this p53 mutation shit storm through love, friendship and a little humor.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)