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.

PET Scan Results- the Adventure continues!

I got THE call.  The call you don't want after your PET scan. No news is good news. There is news.

The first thought.

DAMN. 

Second thought. 

GDMFCSSOB.

I cut to the chase- How bad is it?  

It's not horrible but we have progression and we need to discuss options. I can tell you right now what I'll recommend. 

Yes Please. 

So what we know... the short story is I have some new growth and we have to switch up our chemo to get the cancer to knock off it's nonsense. Metastatic Breast Cancer is a chasing game. We treat, we hope it works, we rescan and hope it's still working. Most chemos for mets last for a short time before the crazy cancer misbehaves and works it's way out of time-out. Our job is to be attentive and keep it in time out for as long as possible. My cancer needs to be put back in time out. 

15 months ago I had lots of round spots in my lungs, bones(femur, iliac, spine, arm). In March- most of those spots had disappeared(major yay!)- except for a shadow on my femur. That is called complete response- all those misbehaving cancer patches- had the chemo and went into time out. So we continued because it worked. 

My cough is back, which is a daily reminder that I am not as healthy as I pretend to be. I do feel pretty ok. Which I am really grateful for. Although there is still activity in my lungs of cancer cells- the old spots are pretty stable. That is good news. Unfortunately there is a new spot in my hilum(middle of the chest- part of the lungs) that's bigger than I'd like, a bunch of new bone spots-in new locations- and the right femur spot of old is pretty angry. On top of that there is a little adrenal spot- which adds yet another organ affected- not good- but also reminds me of Lily kayda's adrenocortical carcinoma and freaks me out. Breast cancer can metastasize to the adrenals- but it could also be new tumor. So that is something we will have to watch carefully and evaluate. For now we treat it like a met- because it is small. 

When new spots grow- there has to be a change in plan. If what you are on is working- there should be no new spots. Mind you the stress of the past month's brain mets- physically and emotionally- probably are weighing heavily on my body. But we have options. We hoped for stable- but we deal with what we have. 

We need to throw some more at the hormoniness of these tumors- they are hormone positive meaning they love estrogen and progesterone -which women's bodies make. I got rid of the organs this summer- but the amazing body has many ways to do things- like creating estrogen from other molecules. There are pills that I can take daily that will stop this conversion- to make sure we have less estrogen feeding the cancer cells. Of course the down side to this is some crummy side effects and bone weakness- which is already a problem due to the mets. But looking at alternatives- you have to get rid of the biggest threats. So I will be starting an Aromatase Inhibitor(AI) called Arimidex.  It's a pretty standard hormonal treatment for breast cancer after the ovaries are shut off(post menopausal).  SO plus side- no extra trips for infusions with this med. 

Since I have new bone issues and will be adding the AI- I keep taking the Xgeva- which helps my bones hold on to calcium and prevent breaks from the weak spots. That is a shot and will still be every 3 weeks. 

Then we have to address the new growths. We will be trying a chemo called Kadcyla(TDM-1- which Phil has taken to calling Touchdown Molecule 1). It is a drug we seriously considered doing first- but  recommended that we keep it in our back pocket and give the other chemo a chance. It's a buying time proposition and we try and eek out each step. We got 15 months out of my cocktail- I would have liked a bit more but am so grateful for this past year- ups and downs and seeing new milestones for my kids and the together time and reconnecting with family and friends. There was a time years ago where there were not these options. I hope for my children's sake and all other fighters out there- there will be even more down the road. 

Kadcyla is essentially Herceptin- with the chemo attached to it that finds the Her2 receptors and latches on to the cancer cells. It is very directed chemo and they have seen good results. It will probably have a similar side effect profile to what I was on before- but we will see.  My doc called it the iPhone 7 of herceptin- kinda wished he had shot for iPhone 8- the 6 was released much too soon. But it will be an infusion every 3 weeks- very similar to what we have been doing. The nurse ordered it today- so we will wait to see if it comes in on time for me to keep on my Monday schedule. 

So the take away is that we have continued hurdles- but I remember how bad it felt to see all those tumors light up over a year ago and here we are today.  We take it a day at a time and live our best life and try to find as much love, comfort and fun along the way. I am very thankful for all the positive energy, love, words, juju, prayers and offers.  It truly makes a difference, for all of us here. I also want to say- if you feel like calling -call- or text or drop a message or a card.  Please don't be afraid to  reach out. I know it's hard to know the right thing to say- because sometimes there isn't anything that can help- but I can tell you how much it means to just even hear I'm thinking about you- and it gives me a chance to respond and let you know that I'm thinking about you too. 

And a HUGE HUGE Thank you for the Team Mallory Support- my friend Gina was kind enough to start the fund up again for a 3rd SALE!  If you are interested in grabbing this fantastically designed Tee by Hope Friedman - it will be up until February 8. There's a new ladies fit too! We've been using the proceeds to have the housecleaned every 2 weeks and tip the Valet guys at Tripler generously. Oh the difference it makes!! I still am completely in awe that we have a t-shirt- but adore seeing pictures of all of our friends sporting Team Mallory. I'm hoping to get to tell you about the gamma knife experience soon- I'm still waiting on my superpower to show up...as my good friend Trish says- I wish my super power wasn't sprouting tumors! 

TEAM Mallory Until FEB. 8

Team Mallory

Right after I started treatment, my good friend Gina- from her remote location- sent me an email asking if she could help create a T-shirt as a fundraiser for our family. I've known Gina for a lot of years and she is a kind, thoughtful person. Of course my gut reaction was- OH Dear God No. But I decided to heed my mutant friends' advice to allow people to help me and took a moment to think on it. I like Tshirts. I wear Tshirts. Phil likes Tshirts. He wears tshirts. The kids are constantly growing out of their Tshirts. We have Tshirts from squadrons, from trips, from sports and now theatre. So why not? 

I talk to Phil about it, knowing full well his reaction is going to be- OH Dear God NO. I was not prepared for the veil of despair that came over his face. I expected the adamant proud reaction- we are fine. I jumped on the defensive and explained we needed to let people who love us help and the majority of our family and friends are over the ocean and cannot prepare a meal or run the kids to school and want to help. At least that's what people keep telling me. He simply said- It's not the T-shirt. I don't want to be the family that has a Tshirt because I don't want it to be that bad. I'm not ready for it to be that bad. 

I understand the panic. The tough realization. I hate that I ultimately am the cause of pain for him. That there is not much we can do to change the course we are on. A course of limited time.  When my brother Bob got sick there was no time. No time to Make a Wish much less have it granted. Barely enough time to say goodbye. Some of the toughest parts are the unknowns. But I remind myself, no one knows. We were told maybe 5 years with Lily. You just don't know. We have some key information that changes the way we play. Perhaps it's time to let our friends play along side us. So I sit down and try to think of what I would want on a Tshirt? That wasn't swearing associated with genetics....

When we joined the Air Force fighter community years and years ago, I made many friends- some by chance, some by design.  It's a family in so many ways. Orders throw you together- but choice keeps you together over time.  A friend, who both she and her husband outranked mine by several years taught me that friendship and respect know no rank. Long before Edward or Jacob became the gold standard of teaming up-she referred to every family as a Team. She was kind to everyone and taught us most success comes from working as a team. I embraced this approach and welcomed every letter and every card that greeted us over the years with her signature address- 

TEAM MALLORY. 

A few years after moving to Hawaii, I faced the challenge most stay at home moms face- what is my purpose? Is this enough? Meanwhile my mom felt further away from each milestone for the kids and I tried to find a way to bridge that gap with a new technology- blogging.  The kids were monkeys in every way- and it became Monkeying Around. As life and technology seem to do- all this changed and grew when Lily was diagnosed with 2 cancers- one of which had and extremely poor prognosis. Entries were no longer happenstance potty training forays- they were a lifeline- a way of healing and sharing the heartbreak and survival through a really dark and scary time. The title reflected our military connection and the focus of the time- Lily Kayda and the Tale of the Terrorizing Tumors. Publicly blogging forced me to find a bright side to every story because I firmly believe that the way you approach a problem and attitude affects the outcome. It also became a tool for me to help others understand more about us and living with cancer as those who live with hereditary cancer syndromes like Li Fraumeni Syndrome have to do.

I never thought cancer would skip me. It is a lifestyle of careful watching. Knowing my body and trying to teach the kids without being oppressive to do the same for themselves is always in the back of my mind while preserving a sense of normal. Although there is always a certain element of shock with cancer diagnosis- when you have a family cancer syndrome like LFS- you kinda are waiting for it. After watching my dad and brother be stripped of their personalities quickly with brain tumors- breast cancer was a relief for me. At least it was a part that could be removed. I knew it was still a threat. But the summer after my surgeries was the perfect answer- visiting family and spending time with my kids on the road- like my family used to do growing up.  One of my favorite mementos from the trip was a necklace I made in Colorado while Kiera tried to decide on which beads she wanted. It was a simple endless knot with a few beads. Some call it a celtic knot. It winds round itself like protein structure or DNA. Some call it a Buddhist knot. Also appropriate since most only know my better half as Buddha. Either way I love the symbolism of it. No beginning, No end. 

with my buddha, my monkeys and my necklace

SO I cut and pasted my ideas into a rough outline for Team Mallory- jet, monkeys, knot- and sent it off to Gina. She took care of contacting the company and after a few weeks they fired off some designs. When the design opened on my computer, my first thought was- OH DEAR GOD NO.  I shot it off to my cousin who said she liked it. It was a monkey driving a very inaccurate cartoon of a fighter jet pulling a banner. A monkey driving a jet? Pulling a banner? No. That is not going to fly. My cousin said no one expected mechanical accuracy on a T-shirt. I've long given up on accuracy but I just felt like it missed the target.   We were fast approaching Christmas, there was too much going on and I was spread too thin so I told Gina I would have my cousin come up with something and filed it away under a dusty mat in my brain. I was a failure at letting people help and I tried not to think about it again. Until Gina forwarded me some ideas her friend Hope, a graphic designer put together. They were beautiful. The knot was the same as my necklace and the center of Team Mallory. Four monkeys and their shenanigans. The jet, symbolic of not only a career, but a family of support. She captured us. And without these amazing ladies- the concept would still be buried under that dusty mat in my brain. I finally confided in Gina that my worst fear is that they would go to all the trouble of doing this and no one would want a shirt. Sometimes it's just easier not to ask for help than to ask and get rejected. 

TEAM MALLORY T-SHIRTS

So Imagine my shock to see within the first few hours, dozens of shirts selling.  The support is overwhelming, unexpected and so appreciated. As a friend said- it is exactly what you would do it for any of us- we just want to help. I knew letting others help me would be difficult- but I had no idea it could be so wonderful. Thank you to Gina for not giving up when I was difficult. Thank you to Hope for capturing a vision. Thank you to those who keep up with us and are brave enough to publicly announce any association to us. Thank you to all of our friends for the support and love. Team Mallory is bigger than I ever expected. Thank you for Hanging Strong with us. 

Shirt Orders can be placed until February 15, 2014.  CLICK HERE to Join TEAM MALLORY