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.

Half way.

A couple of long days, but not too stressful. I am super grateful for the new peds radiologist. He's been really great about working with me, listening to my concerns and the radiation techs- who have known us for years, have been wonderful.

Lily's day started out fasting- since they try to get good images of her belly and that's where the adrenal tumor would likely grow back- it's better to not have a lot of extras in there. We all know how much Lily loves food(what's not to love?) it is a minor challenge. We all tend to get Hangry - so we sat down and went through old baby pictures to distract her. Of course as we sit there, she's sniffling, coughing and says her throat hurts. So just like her mama- she gets sick for scans. Which other than worrying about the breathing and coughing- what do you want to do when you feel sick- lay around and sleep. Not in a cold, hard, loud, tube- but we take what we can get. As we looked through pictures, I found the one that always sticks out in my mind. This is one of those pictures that always makes me think- wow, was that big old adrenal tumor already there?

But we can't wallow or participate in shoulda coulda wouldas. We learn and go forward. Which is why we scan. There is a lot of anxiety surrounding scans and one of the reasons many clinics won't do it- they feel it causes more stress than benefit. I think it is an individual thing- like anything. This is one of those times genetic counselors and a good support staff is instrumental- they help people decide what is right for them in this area. Some find the scans too stressful and  pay attention to symptoms and have things immediately checked out. Since we have been doing this cancer drill awhile- and over many generations- there is some merit to both. Ideally the routine that works with the person's needs and coverage- is ideal. I didn't scan for a lot of years. It was too stressful, but over time I have seen first hand how catching tumors early has definitely advantages in survival. There are still so many unknowns, but I want the best chance for my kids. There will be tumors due to type and location that really not much can be done without damaging quality of life. Those decisions suck. I have one of those decisions in my head. You make those calls at the time you have to with the information you have. 

We get to MRI around 10:30. We fill out the papers since they last a year and it's been a year. I don't think I've never not filled out the papers- but its one of those things- it's almost automatic. I read the questions out loud so the kids can answer. The are you currently pregnant question usually gets fun responses. 

The tech hands Lily her scrubs and takes the movie Lily brought to watch in the groovy MRI goggles. She changes and we go over the plan. There's a lot to scan. She has a dedicated brain and abdomen as well as the full body for LFS screening. They try to minimize the time as much as possible but really want good images- so we know it's gonna be a long day. She said in between each set she will give Lily the opportunity to get up and walk around. I know this adds on to the overall time, there are coils and gear that has to be taken off and reset each time she moves- but I appreciate them taking good care of her. 

off to the races. 

The goggles before they put them on- with headphones, under the head "cage"

Overall, Lily is in the scanner about 4 hours. The peds radiologist comes and talks to me after the first round, it all looks good so far and then each subsequent round. We talk a bit about LFS and things I've noticed with Lily and through others' experiences just to help him understand my concerns. He has a 10 year old and it shows, he is great with Lily and great with me. I appreciate the extra time and care. Most MRI facilities are really busy, Tripler is exceptionally so(lots of active people and dependents) and they are down 1 machine. They brought in a portable out in the parking lot- so patients periodically come in, change and head out back. It reminds me of my very first MRI when I was 15- in the parking lot of the hospital. 

Lily comes out a few times- they had to run a couple sequences over- which in MRI world means starting over. The cold is definitely a factor and I feel bad for her- but she is doing well. We walk up and down the hall and I rub her back. Then she gets a bit of a reprieve- the system has to reboot and so she plays on her iPad for a bit. As she goes back in, the doc comes and we talk about her arm. We've been watching a spot for years in her humerus. We kinda forget about it in between scans and then it's like ripping a scab off- oh I forgot about that. This is one of the gray areas. You find things that could be normal weirdisms you'd never know about- or it could be the beginning of something. In LFS we tend to err on the side of it could be something and out is better than in. But that works well for superficial lumps and bumps- once you get deeper- you have to start weighing benefits and risks of digging around. He would like an Xray to check. I used to freak out about X-rays- but I know that it will give him different information than the MRI and it is better to see bones with.  I ask- if it doesn't really show anything are we going to come back and look more with MRI and should we do a more dedicated MRI since it has grown a couple millimeters and she is in there and we still need to look at her arms? And this might be the point he starts wondering what he got himself into with us. So I explain- we grow weird. That certain cancers seem to pop up at certain ages in LFS. On a normal person I would be ok saying"it's a cyst" and maybe monitoring it- but in an LFS kiddo with a history of 2 cancers already- I would be more comfortable with more information especially if we need to decide to biopsy or remove it. I explain how the sarcoma in her leg and my arm really never concerned the docs and it was at my insistence they were removed. It happens a lot in our group of mutants. And with hormone changes and this age- I need to know more. I want her oncologist to have more information. He orders the dedicated MRI. The tech tells me she saw the Mallory's were on the schedule and took leave for the rest of the week. I joke she should know- Lily's not the easy one- she shoulda taken Bella or Kiera. 

Lily is done just in time for her hearing aid appointment. Which luckily is just down the hall. We enjoy a little Chopped while we wait for the audiologist. She's getting her new streamer so she can pair her hearing aids to blue tooth and use them as headphones. It's actually pretty cool and she is stoked. 

rocking out to Katy Perry. Roar.

We head back to radiology so we can look at the images with the doc and squeak into the Xray. It's now after 5 so the hospital is quiet. I like this time in the hospital. And I know traffic is a bear- so no rush to sit in it. I feed Lily a pop-tart from the vending machine because I know she's starving. The spot in her arm is bigger than I like. Definitely want to discuss this with her onc. She is fascinated by her insides. Her left adrenal looks good, a couple other areas I was concerned about look good. I feel positive overall. We head over to Xray. 

The tech wants to know which part hurts. I tell him they saw a spot on MRi and we are cancer screening. His bedside manner instantly is more genial. We finally are done for the day. I read half a book, my head isn't splitting, I've managed stress and lily did exceptional. I thank her for doing this and she gets to pick dinner. 

Chili's- Root Beer and games

We get home and pretty much crash. I had been patting myself on the back for how well I handled it-and that I was feeling pretty decent and then the exhaustion hit. I woke up Thursday feeling pretty awful. The debate- do I go back to bed or get on with the day? I went for a walk and called Monica for a mini mom melt down. I wish she was next door still- but telephone works. She reassures me that I'm allowed to be exhausted and tired and it will be fine. Sometimes you just need to hear it. I take it easy as possible until afternoon activities. We take Phillip to work out, Kiera to voice lessons, a quick stop at Walmart for necessities and a movie for Bella in the scanner- she's a huge Divergent fan and the Allegiant was out on DVD. We pick Phillip up- drop him and Kiera off- they will take Lily over to Aunt Theresa's for dinner and Bella and I are off to Tripler. 

1st non sedated solo MRI- rocked it!

Bella is milking the hunger thing- and suffers from my nervous bladder. I think we stop at every bathroom. We fill out her forms, change her into scrubs and she and Ducky are ready to go. Ducky gets a quick check in the metal detector and is approved to ride along for the MRI. 

Bella and Ducky- a special stuffed comfort made by her friend Sophia. 

I like the quiet of evening MRIs. Except for the construction and the noxious chemical smells that are coming from down the hall. Fortunately they only work until 6 and it fades when they close the door. The tech pokes her head out and says Bella is doing amazing. She even passed up the first break.

Bella and Ducky

 She comes out a couple times after that and we walk down the hall and get a drink. She is so much more relaxed. I'm glad it wasn't as bad as she feared. She wants to see outside, which I find fascinating. We walk down the hall and I warn her it's dark out- so we can't see much. Overall she was pretty quick- less than 2 hours in the scanner. She is the shortest one- so that helps. Phillip is gonna take AWHILE. She picks Taco Bell for Dinner so we make a run for the Border. We chase that with a McDonald's ice cream cone. I thank her for going through it. I know it's not normal, easy or fun and I appreciate it. I'm impressed- I knew she could do it- I'm glad she did so well. 

Proud of this Kid!

Tonight is Phillip and tomorrow morning Kiera. Phil has Phillip duty- which after an overnight alert shift last night means he'll probably get a good nap in the waiting room. 

I don't expect to hear about the kids results right away- hoping maybe to catch up with the radiologist on Saturday. I'll give him time to make the formal reports and call the oncologist next week. Thank you for keeping us in your thoughts, I definitely appreciate it.

Pulling for Supermom

So here's the plan. Yesterday I had a super duper High Definition MRI of my brain.

We were referred outside of Tripler for the scan- which in all honesty was fine with me. It's nice to see how the other half lives from time to time.

We walk in- Koa wood decor- friendly receptionist- chilled water available for consumption. The familiar hum and rattle of the MRI machines next door permeate the check in process. The seats have cushions. There are not 1 but 2 TV's so everyone waiting has a view.  I get called back to my secondary waiting room- which is slightly smaller than my living room and I get handed a remote control to watch TV.  The plants and surroundings are neither sterile nor terrifying. Before I can even find something to watch the technicians are ready for me and lead me to the machine with headphone so I can have music to listen to since they noticed I marked that I am claustrophobic. Isn't that my luck - little waiting in the room that I wouldn't mind waiting in.

Some of the problem is that I was to have a PET scan last week. Well due to scheduling gymnastics associated with having brain tumors- it was cancelled and not rescheduled and there was a mix up. As it turns out- I came down with a nasty cold that afternoon and it is just as well that I didn't have to chase down guesses or repeat scans to determine if spots were cold or cancer.  I've had colds for scans before and nothing quite adds to the claustrophobic effect like thick mucus dangling down your throat and an MRI tech yelling at you to hold still. Yet the these techs handed me a special cough drop from Chinatown and I'll be darned if that thing didn't work. An hour later I was done- neither suffocated or coughing.

As we left the MRI suite, we noshed on a rather delightful salad from the coffee shop in the foyer of the building.

The MRI is important because is it going to help the surgeon and the radiation oncologist pinpoint the exact coordinates of my misbehaving tumors.  MRI gives the best resolution of swelling vs tumor and all the various structures in the brain.

Jen's toomah

Tomorrow, I go for gamma knife. There are no actual knives involved- it is not surgery. It is pinpointed radiation.  Around noon- the neurosurgeon will screw(yes- screw- and it is as terrifying as it sounds) a frame to my head. As terrifying as that is- the reason is to help zero in on the tumors and to prevent movement.  Then I will have a CT scan. 

After the CT scan- I will get to wait with Phil and my new frakensteinian head piece- while the doctors plot and plan the coordinates for treatment. They look at the MRI and CT and tell the computer exactly where my tumors are.  From there it is pretty much a software driven deal. When they are ready for me- they put me in the colander (which I think they technically call Collimeter) but potato/potato- see the round thing with holes in the picture below? That thing. And this is where the anti anxiety meds are worth their weight in gold. 

I then get pushed into the massive radiation machine which shoots tons of radioactive beams that individually aren't too scary yet when they converge in the right spot- ZAP! Then we hope hope hope that :

this works.

there are few side effects. 

I don't freak out. 

Afterwards they put corks in the screw holes and I am bummed it's not october cuz I am the bride o Frankenstein.  Kidding. Apparently they put bandaids on the holes- which are just flesh wounds- but we all know how much the scalp likes to bleed. And we go home and hope for no complications. 

And hope the tumor dies. 

and hope my brain does not swell. 

and hope for minimal side effects. 

When I was 17 my dad had a brain tumor. 3 years before my brother did. Brain tumors- I am familiar with them and they scare the shit out of me. They can take away who you are, what you can do and your future. They are angry little bastards. Mine just happen to originate from my breast, we think- so here's to hoping they are boobs. The only way to know for sure would be to biopsy- and biopsying brains is pretty tricky and if you are going to biopsy you might as well do surgery. Gamma knife radiation is "less invasive". It is the best option for the situation. It would be the best option no matter the tumor type. 

I remember vividly sitting in a cold room, very much like the MRI waiting room at Tripler- listening to the humming and bustling of nuclear medicine- trying to read Anna Karenina for IB English and failing miserably.   To say that this process brings back a lot of hard memories is an understatement. 

Yet I remember how far we've come since then. How far I've come since then and I know- what will be, will be. I have more to do and am confident this is yet another step on the path I am supposed to be on. For years I had been terrified of chemo because it almost killed my brother. Yet it worked for me. For years I have hated radiation for making my dad's tumor angry. Yet here I am facing down yet another fear. 

It's tough because with exception of a nasty week of vertigo- I feel pretty OK. I keep being told this procedure is tolerated very well and I've read reports that it has been successful in LFS patients. Of course I tolerate a lot of things that I feel are bullshit- so this might be more of the same. Worst case scenario- it doesn't work, I have side effects, swelling and end up having to have surgery to control swelling. Best case scenario- the tumor dies and I can control things with my mind. 

Tolerates well= go home and have a headache and maybe some nausea. 

not too bad a deal if it works. I could have residual damage- hearing loss, vision loss, and others tumors could pop up. But we are going to hope for the best and pull for Supermom!

SO pull out your Team Mallory Shirts or your MUTANT tees if you got em- we need some extra good juju tomorrow.  Do something tomorrow you've been wanting to do for awhile but haven't or just do something fun- in your shirt and send me a pic! Many hugs from Paradise.