The Meaning of Mutant.

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

mu·tant  ˈmyo͞otnt/

dictionary.com

adjective

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

noun

1. 1.
a mutant form.

Merriam Webster Dictionary

NOUN

: of, relating to, or produced by mutation

OXFORD Dictionary

ADJECTIVE

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

NOUN

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

Cambridge Dictionary

NOUN

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

• PURE FUCKING AWESOME BADASSNESS!!!!
• 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.

Insufficient Breaks

Ah Life. The ups. The downs. The more downs.

Lily was looking for pictures the other day and stumbled across the blog. She read quite a few and we sat and talked. She had lots of questions, she didn't remember a lot. Part of the reason I started blogging was a journal-now reading back- I don't remember a lot and then the words crash around me. It's not easy. We've kinda dealt with a lot of shit. It's been tough to write lately- finding time, emotional energy and not be negative. Although as a good friend reminded me- you can feel the toughness and you don't have to be happy about it. Happy about it has been elusive.

Lily is doing the best of all of us right now. She and Kiera remind me a lot of me at those ages. Bella is truly a unique creature and dealing with being 11. Being 11 kinda sucks- in case you hadn't heard- she will tell you. The snark is strong with that one. Lily reads and reads and reads. real books. she prefers them to the kindle or electronic versions. I understand. She says she just likes the feel of the book and turning the page. We visit the library, a lot. She has friends at school and seems to be really happy.

Kiera is struggling with the challenges of the IB program as well as the time requirements for dance. It is so different than where we were with Phillip at this point. She is realistic and although she loves to dance- she does not think she wants to make a career of it. I just hope she will continue to dance, she would like to start a club at school. She is talking about withdrawing from classes after their Nutcracker performance. She really stepped up and became the little mommy for us last year, I really can't argue with her wanting just to have time to be a teen.

Bella is 11. not a little girl - not a woman- plain ol trying to figure things out. We just extricated Lily from this awkward place- or she grew out of it- so we apply miracle grow and hope for the best. Tomorrow is her arm MRI- finally-hoping to rule out some of the anxiety around that thing.

Dobby is like having a toddler. He eats things he shouldn't, poops where he shouldn't and needs lots of attention. Of course everyone gives him attention in their own way and that amounts to several hours of circus dog training for him each day. I walk him a bunch which is good for me physically and emotionally and he enjoys quiet naps in the sun while the kids are at school.

My sweet Phillip. He turned 18. And magically did not instantaneously gain the wisdom of life that adulthood promises. After being in a relationship for a year, young Romeo and Juliet were told they could no longer see each other. Although I don't agree with how many things have been handled, we absolutely respect her family's wishes. We lost part of Phillip last year, I thought it was me, I remember all too well being surrounded by sickness my senior year. I practically lived at Phil's house that year,  But it wasn't about me. Phillip was in love. All focus was lost, he started to lose himself in the relationship. His grades were the first indication, then he didn't apply to some colleges we had talked about, he stopped talking to us, he wasn't careful with his blood sugars- which made him angry, a lot.  He was going through a pretty normal thing with a bunch of not normal. We were trying to cope with a pretty normal thing with a bunch of not normal. Just when I'd see glimpses of him and think he was moving on, he'd slide back. My poor child - cursed with his father's loyalty and my passion for saving lost causes.  Oh to be able to share the insight on that and have him hear me.

Parenting is not for the weak. You lay the foundation and just pray it holds. I wish I could prevent him from heartache, but these are the experiences that break the heart wide open. With the right healing- the capacity for love will be even greater.

My adrenal glands just aren't recovering. I try to manage physical and emotional stress the best I can(I have a new dragon egg smelly thing- as the kids call it- a diffuser for relaxing oils)- we are the opposite of relaxing- even on our most laid back day. The night after my last chemo- I went into adrenal crisis.

I thought it was a headache. Which stresses me out- it could be the weather, it could be the stress- it could be more. So I retreated to my room with oils, tylenol, and ice pack then a heating pad. Within minutes the rest of the available Mallorys were sitting around, playing with Dobby, rubbing my feet. Everyone knew something was up. My stomach started hurting- again catch 22 stress- then the vomiting began. I tried zofran, I tried heavy steroids, everything came back up. I felt horrible. Phil decided I was not in fact contagious and needed the shot. He tried to take my puke bucket away. I cursed him- I think it would have made a great remake for the Exorcist. He finally gave me the shot, and we headed to the ER.

Of course the ER didn't know what to do with me, we enlightened them. It was slow going. The shot kicked in- iv zofran was lovely and fluids helped. I upped the steroids the next few days and then wean back to my regular dose. The dose changes are always tough emotionally. And life goes on and I make dinner because Phil has extra work to make up for the unintended day off. It's a reminder to take better care of myself for everyone's sake and well adrenal crisis really really fricking sucks.

My adrenals are quitting, my platelets aren't bouncing back- nothing transfusion worthy- just bloody noses and bruises. Like anything- I know so many who are far worse off- so I dare not complain. But my gut says we need to strengthen my body again. So after meeting with my oncologist and some thinking- we are holding chemo- the idea was until we do a PET scan. IF there is no progression, or evidence of active disease- we can evaluate and come up with a balance. But of course the PET is not available until the week after Thanksgiving- which would mean skipping 2 treatments. No one knows the right call. SO it's mine. Choose your own adventure cancer style.

SO I go with what I know versus what I wish. I know that I have aggressive cancer that keeps trying to find a way to thrive. I wish No evidence of disease meant I didn't have to worry- I will always have to worry- it's just at what level. I know it could be worse. I wish it was easier. I know I am tired. I wish I wasn't. I know that chemo is keeping the cancer at bay. I wish it didn't damage the other systems in the process. It's time to mitigate damage before it's too late, while not letting the cancer get ahead and this is what managed care is. It's not a cure. Other things go wrong, you have to roll with it and hope to keep ahead of all the bad things. And sometimes you just need a break.

So I will probably head to chemo next week and pound steroids like a world champion cyclist. Thankful for a little break, help the kids with the big ones, wait for the PET and hope for the best.

Steroid Deep Thoughts: Undercurrents

There are so many undercurrents in our world right now. Our world. Earth, not just planet Mallory. Undercurrents of politics, violence and upset. I feel like I've had a lot of talks with the kids, with Phil and we are working through some really bigger than us issues.

It's scary as shit. And really hard when you are dealing with tough shit. Sometimes it feels like everyone is blissfully moving along with their lives around you and THAT can be hard enough when you are up to your eyeballs in cancer death threats. It is a choice not to wallow in the only if's. It is a daily affirmation and effort to BE in your now, deal with your shit and not try to compare or look at someone's else's world and somehow rank it all. I would truly like to thank our circumstances for the continual throat punches of reality that take me so far out on our own little island, that I've embraced the perspective. It's not a competition. Like no 2 cancers are the same, neither will anyone's path be. Instead of judging and being pissed someone has what you wish you had- be happy for them. Or just walk away and try to enjoy your life. If you want it- GO for it. If circumstances don't allow, will.not. allow. Then you and you alone have to find your happy. This doesn't mean we always are happy and dang skippy sometimes you have to fake it a bit to make it and fucking settle. By fake it- I mean put on that smile and be a decent human even when you want to barrel through crowds of people screaming profanity. By settle I mean play with the one remaining boob you have left. Define boob as you will.

Other times it feels like everyone is up to their eyeball in their own shit. We have too many people who are struggling, battling through crowds screaming profanity- posting, twittering, snapping, whining how upset they are with everything-Trump sucks, Hillary sucks,  no you suck, stop helicoptering your children, pay more attention to your children, sick of this, sick of that. Voting in this election this year is like having cancer in your brain. It might be ok. Everything might grow and swell and you might have to have surgery and nothing will ever be the same again. Or it might be fucking OK. So what do we do- you clean the house, you teach the kids to be decent humans because THEY ARE our future. We BE decent humans because we are the now. Everyone may ignore us but maybe just maybe someone might be paying attention and take cues from us. BE the changes you want to see, no matter what is going on around you. Do not blindly follow someone else's path with promises of change- it's not YOUR path. You can walk along side them, help them but look around- is this where you want to be going? Your path will be forged by your steps. They might actually be helping you around an undercurrent.  Each one of us has the capacity to make the choice to be calm in the face of crisis. Be the leader that others look to and try to emulate. Do we really want our kids running around posturing violence and puffing up their entitled little chests about how better they are, just because they can? Part of being #Blessed, is not the slactivism, the smug faithless announcement but rather NOT taking the opportunity to share in whatever good fortune you have. Not so blessed is it?

My grandmother existed on a fixed income for decades and she was the most generous person I have ever met.  With her time, her words, her food, her money and always always her prayers. She never taught me these lessons in any sort of core curriculum but the lessons were learned. The woman lost her husband in 1958 to a disease that might as well have been the plague for the stigma attached to it. She raised 5 kids and worked in a time where women simply were not considered competent to do anything but raise kids and even that with some good male supervision. And here we are a mere 60 years later with a woman President candidate and a billionaire.

 I would also like to point out that 8 years ago we elected our first black President. It's completely appalling to me that I have to put words like woman or black and first in front of the word President or anything for that matter except an official document where that identifier is somehow needed. Because we are all people. Somewhere along the line they did something to put themselves on a presidential path- work hard, compromise, make lots of money, investments of some sort. And many would like to blame everything on a single person, the President and have completely lost sight and perspective of the big picture. It is a democracy. There is choice even if so many facets of the system are outdated and broken. It is OUR broken system. The foundation is still solid. If you don't keep up with routine maintenance, you are gonna have to pay for the big repairs or Get up off your ass and fix it. You don't have to go to congress, you don't have to be in politics to make YOUR world a better place. Invest in your family. Your time, your words, your money. Invest in your community. Your time, your words, your money. When you have no time, no words, no money, Then act. Act kind. Act compassionate. Act responsibly. Act like you are not the only person who matters.

Everyone has battles and although it feels like everyone is airing their battles on social media- the ones with the biggest battles are the ones you probably have no idea about. THOSE are the people we all are letting down, those are the ones who do whatever needs to be done, to GET IT DONE. Or they die trying. Which means sometimes their kids don't get 100% of their attention- but their kids get 100% work ethic. There are people who could literally go postal at any second(remember when the post office was the scariest place where someone might lose it? Now planes, schools, theaters, clubs, EVERYWHERE is scary and you can just about guarantee someone might lose it). People are losing control of their anger all around us and it is ridiculous. The violence is ridiculous.

Social Media is like standing on your doorstep and screaming. Your neighbors are gonna hear you. Your friends are gonna hear you. The poor guy just trying to walk his dog is gonna hear you. We have taught ourselves that this is an appropriate way to behave. That everyone is allowed their feelings and actions and to be who they are. Ok. But your feelings and actions do affect other people- you cannot choose how they will interpret them but you can choose what you put out there for them to interpret. And if you don't give a shit what people think- why on earth are you putting it out there if it doesn't make the world a better place? Your world, their world, our world- whichever world- it is the same, it's only different when we think it is. Sometimes the water looks calm. You have no idea what is under the surface. There are undercurrents. They are dangerous because you can't see them. You definitely can not stop them. So you avoid them or you try to keep your ground. If you try to fight them- you are literally just wasting energy. Take that energy and make it positive. It feels better. Sometimes you just have to let the undercurrents be, walk away.

Being at the hospital a lot lately, I see people at their best and their worst. Stress, exhaustion, grief and pain bring out the best or the bring out the worst. I will again say it- because I tell my children- YOU have a CHOICE. Every feeling, every moment you have the ability to make a choice. Sure it's harder when you are tired and stressed. Even if it is in response to something out of control, you choose how to react. When someone is stomping around the vendor yelling at the poor cashier, I want to tell her to stop being an asshole as I watch an older man with unsteady hands trying to pour hot coffee as she flails around near him. Yet I carefully move myself between her and him and hold his cup. Sure I might get burned, but we might both get out of this better off. I don't know why she's there, what she has going on or why she thinks nuking artificial ramen in a styrofoam package for 3 minutes is a safer option health wise than the recommended 1.5 by the cashier. It's not even FOOD.  I do know that my engaging her will not help. She is on her path and it unfortunately bisected mine. I do not want to go down that path. She stomps out. We all live. I don't know if she is having a bad day or just a bad person. But she put a whole bunch of negative out there that I had to throw a bunch of positive on to balance. Hospitals are exhausting. Draining. Any place can be. Share your energy- the good kind, because if you have some to spare- there's usually someone nearby who could use some.

I'm not saying don't vent, don't feel the ick, or ignore the tough stuff. Do not put on the rose colored glasses, unless you need to rock that look. Then rock it until further notice. Just don't throw negative out into the world unless you have a plan for cleaning it up. If you can't try to make the world better for you, why should someone else?  Mind the undercurrents. They could pull you under or change your path. You may not want to take the path it is trying to put you on, but who knows what you will see or do along the way.  And sometimes there might be someone struggling with the undercurrents and they might just see your path and travel with you for a little while.