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.

Summer Break LFS style

Part of our summer routine is scans. With Li-Fraumeni Syndrome, we try to catch cancer early with the hope that we can treat it. Ultimately we hope to find nothing. We try to stay optimistic- we know lots of people who have LFS who don't have cancer or have had really good success catching tumors early. There is a certain amount of stress associated with this looming cloud- we call it scanxiety. It is real. It is vicious and no matter how much you tell yourself not to worry- you do. I get a little manic- trying to get things in order- just in case. Nothing goes wrong if everything is in order, right? Not exactly, but your mind plays these games because we are human and we have feelings and a need to preserve our future.

Before we can get the scans ordered, we need to have an annual visit with the kids' oncologist for the general clinical exam and talk about any concerns. There are a couple this year, but one of the good things about these appointments is that the docs are reassuring- most concerns fall along the "normal" kinda kid development curve but my concerns give them an opportunity to order more or less tests to rule out problems. The kids know the way to the clinic. Phillip and Lily are followed more closely because of his diabetes and her history of cancer. Unfortunately with LFS, once you have had a cancer, the chances of another one developing are much higher. Lily's already had 2. Sometimes we forget about the sarcoma in her leg because it was a lesser threat at the time.

 They line up for weigh in. A good math exercise- converting Kilograms to pounds.  I try to pay attention since I know I will need this information when we schedule MRIs. But my memory is a bit suspect these days.

 Then we pile into the treatment room for vitals. Our nurse was a saint and helped us out by managing to get all 4 kids seen at the same time. I appreciate this a lot.

 After vitals we wait in the oncology waiting room while the kids are seen in pairs. They meet with our oncologist, who will be leaving soon. I am very sad, she's been with Lily since the beginning of this journey. 2 residents also sit in. Tripler is a teaching hospital, but I also like to expose as many young doctors to our weirdness as we can. Some days I'm not in the mood- but I know how important it might be for someone else down the road just to hear- sure I've seen LFS before.

 Lily practices taking Phillip's blood. I warned them we will have to do bloodwork and a poke is involved. My kids all have my tough veins. Sorry about that munchkins.

 We LOVE special visitors like Lili the dog. This helps settle the nerves and pass the time. We talk about our other furry friends Bailey and Indy. We visit with our favorite nurses and child life specialists and docs. We miss them but also kinda grateful our visits are infrequent.

 Lily gets a bonus urinalysis this round. Love that she's old enough to handle this like a champ. Hate that she has to and that she mentions that this is one of the easier tasks. Some families do ultrasounds and other exams for their checks and get blood done every 3-4 months. After careful consideration with our docs, we agree with all our other visits and since we aren't actively monitoring problems- annual visits are good for now. It is a balance.

 Time for bloodwork. A quick poke by the lab specialists- they are the best- I've really never had a problem in the Tripler lab. I know this is stressful for the kids. It's easier afterwards when they all say it was easier than they thought it would be. Lily still has some pretty bad memories of bad poke experiences and a bit of PTSD but other than a stress tear that leaked out she breathed through the process and lived to tell about it.

 7 tubes for each kid. They look at the blood counts, adrenal hormones, and other possible markers of cancers.

Who gets a bonus 5 tubes drawn- this kid! Grand total- 33 tubes of blood from the kiddos.

 The car ride home is a good chance for nap time. I am glad we can take these steps, even if it is stressful. As they get older, it will be part of their routine and they will have the experience and tools to make the best decisions they can for their health. I would love to protect them from all the bad stuff, but some of it is just unavoidable. The best we can do is hope for some good breaks and deal with what we have to. Really it's true for everyone. Until then we have fun and try to do normal fun summer things!

Next week I have treatment and my Brain MRI- really hoping things are stable. The following week I have my PET scan and the kids each have their full body MRIs on different days. Each one will take about 3-4 hours. It will be a long week but hopefully will give us some peace of mind. We will take all boring and clear thoughts we can get!

Life Rafts in Mutant Land.

I got to spend some quality time with my family this past week. My online mutant family, some  of my own mutant family and some non mutant family. Sometimes when we are far away on an island, it's hard because I miss my family so much. The milestones, hanging out for holidays, the craziness. Sometimes I'm glad to be on an island and missing out on some of the craziness. But there is nothing like the loneliness and helplessness you feel when cancer wallops your family over and over and you are an ocean away. Add in I'm not the biggest fan of air travel and the carefully orchestrated planning required to keep our routine afloat- that means my travel plans are thoughtfully considered and often come down to last minute luck. I sit and fretfully worry about the deluge of problems that might befall me anytime if the cancer Gods so much as get a whisper that I might be planning a trip. Yet, we have carefully navigated this superstition and the outlook is good.

When the Li-Fraumeni Association announced the 2016 LFS conference in Columbus, Ohio I was a bit disappointed- Columbus. It's not as far as the east coast, but still a bit of a trek. Of course the last time I was actually in Columbus was 20 some years ago and we merely drove by in 2012 during our summer tour. Man has Columbus changed! The airport and city were clean and very friendly, I was really impressed. The other really big positive was that it was within driving distance for a lot of my family and so many of my online support group friends. Several sponsors of the conference are local to Columbus- Nationwide Children's Hospital, and The Ohio State University. They have worked closely with the Wyss Family(Soccer for Hope), who has been profoundly affected by LFS and has dedicated over a decade to helping foster LFS research and advocacy.  The other bonus is that the Ohio State University has a really good Biotechnology program and I have a high school senior who will be looking into colleges this year. Perfect timing for a mother-son trip and maximization of my traveling to visiting people ratio. Talk about getting your proverbial mutant bang for your buck. Probably shouldn't say that out loud. or at all.

Families, real and acquired can be a tricky business. In mutant land, I've acquired some extra family by choice who are as genetically volatile as I am. I've heard my uncle say more than once that our genes were fished out of the shallow end of the pool. But some of our other ones come from the deep end of the ocean- the ones for resilience and empathy and ability to triage bullshit into a palatable sandwich and laugh about how crappy it tastes. These traits make for some really interesting after conference discussions. Many of which are fueled by adult beverages.

There is no way to get from Hawaii to Ohio without losing a day. Phil, being the dedicated compassionate, wonderful husband he is- not only phenangled travel arrangements, his schedule and childcare for the girls so Phillip and I could attend- he understood how important it was for me to go. The time I got to spend with the younger Phillip was invaluable. He used to be little. He's not anymore. I know most moms wish to slow down the growth, I don't. I'm grateful for every moment, every step. Even the ones that are icky and exhausting and I have to chant over and over- I'm grateful for this. I'm grateful for this. I had a few panic moments of- shit- he might actually be going off to college in a year and I might still be here. That's where the panic set in- I'm not upset we are to this step- we live on an island- he hasn't toured colleges- he doesn't know what's out there, how can I make this happen much less even consider it financially or medically. It makes me momentarily miss normal until I realize there is the illusion and opportunity of normal and this is it. We can't spend weekends driving here and there to peruse the interstate options. He's seen colleges, but he was younger and your perspective changes. Columbus was a good opportunity. He's dealt with diabetes and what it means for him for years, but learning about LFS is more of a gradual education in our family. Gradual in the sense of disaster preparedness training, I set up the foundation of appointments and we work our way into what exactly the risk means as they get older and can understand more. It's lining up your life rafts and hoping you never need them. Sometimes you get schwacked with information rapid fire as the tidal wave of each cancer diagnosis happens. College will be a strategic placement near someone we are close to- so if the shit hits the fan-he is near someone or at least within throwing distance of a lifesaver.

This year, young Phillip came home from AP Biology with a lot of questions- they were learning about TP53 as a tumor suppressor. He was a bit overwhelmed by the implications. But then he started asking questions- how do we treat it- what about this- what about therapy- what's being done in research? I think I want to help find a cure. I will admit that the fervor and hope I had as a young woman about the idea of a "cure" in my lifetime faded a bit by the constant barrage of cancer and loss in my family. As my dad laid dying he never once discouraged me, even though the hope for a cure for him was not even a possibility. He had hope for me and I have hope for my children. Suddenly I mentally transported to 1994, considering college with a sick parent, being unsure of finances and life and this big step- not wanting to be too far from family but wanting to be far enough for some space. I could see the weight on Phillip's shoulders. Normal college kid wants with the shadow of cancer. Taking Phillip to the Columbus achieved so many goals, quality time with each other, family time, learning about our syndrome, and checking out a college. I contacted friends in the area to coordinate visits and managed to line up a tour of OSU with a mutant friend's son. I love it when a plan comes together.

We landed in Columbus early Tuesday morning. Fortunately a room was ready and after 19 hours of short naps on 2 different flights- I was ready for a couple hours of horizontal napping which would refuel me for mutant shenanigans. I woke to texts from arriving friends and so began 4 days of therapy and hope. Like I said, mutants are a bit volatile. Not in the aggressive way, but rather the combustible nature of our cancering. Treatments and screening take time and resources and often times- that time and those resources have to be filched from normal sick leave and budgets. It is not easy to find a chunk of time or money to make it to a conference in Ohio. We tried to help as much as we could through Living LFS, and there were quite a few scholarships granted from the other sponsors- which helped many get there who would haven't otherwise been able to. The therapy was immediate and tangible- usually in the form of laughter through tears- the best kind of tears. The evidence of wounds gradually healing and sadness released into the wild. It is a rare gift to be able to meet friends you've met online and feel like you've known each other forever. This wouldn't have been possible without donations(remember those fun t-shirts?! yep- THANK YOU!) and the sponsorships. It was also great to see the number of family members and researchers that took the effort to be there. When you have a really super rare disease and you get to be in a room with a couple hundred others who get it, who are all working towards the same goal- it's pretty inspirational. And humbling. And exciting. And let's face it- mutants are awesome and so are their families.

I got to hug old friends who I haven't seen since the very first 2010 NIH LFS conference, new friends we met in Boston and Portland and new new friends who will now be the Columbus friends. I talked with mutants about how to talk to kids about LFS, how Phil handles being a spouse and the ever present balance of loss and hope. I talked with researchers about new developments in adrenal cancer, like Lily's and mouse models for LFS. I talked with Genetic Counselors about resources and needs in the community, the possibility and hope for family camps. Talk about one of the many times I wish I could clone myself- so I could just sit and talk with everyone.  Yet in true mutant fashion- we packed as much as humanly possible into the short time we had. We set up a Living LFS table with hand outs and information and of course- hugs and support. The young Phillip got to sleep in and decompress from 4 AP exams the previous week but also got to chat with people about LFS and hang out with family. It was meaningful to look over and see him respectfully trying to communicate with a pediatric oncologist from Japan or hanging with Aunt Kathy and Uncle Tom. Or to look across the room and see my uncle chatting with a friend we met in Portland. Or to see my mom and aunt hugging a friend from the support group who just lost her daughter.

We talked a lot about the ones we lost, in a way where you didn't feel overwhelmed by the loss of it, but in a way you  feel when you talk to someone who understands, who has been there. In ways that honored their memory. In a way that says- LFS sucks but look there's a life raft off there in the distance- the hope for a better LFS reality! You say their names and it doesn't sting, it feels like you are saying hi to them. You skip the conventional formalities and jump right to the heart of communicating and relating. Sometimes it's difficult to interject Bob and Dad into conversation without the emphasis on loss- I've dealt with it, but sometimes the people you talk to have a tough time. There are awkward silences and discomfort. But in this group, I could talk about them freely and there was none of that, just hugs of encouragement and nods of understanding. I missed Bob and Dad, as I do every day. Having my son, mom, cousin, aunt and uncle there with me fulfilled a need I didn't really realize I had until then. I missed my aunts. I missed my cousins. It was nice to have a strong Connolly contingent there.  I know for many it's hard, these gatherings sometime emphasize the loss.  Feeling lonely in a sea of people. Until you connect with others who are floating in their raft- fishing for those qualities in the deep end of the ocean and you latch your rafts together. And I realized that in taking Phillip to this one conference in Columbus, I opened up some options for college. Not just OSU, which he was really really impressed by- but the number of potential life rafts grew exponentially as he got to know the residents of Mutant Land. And although we are not genetically family in the normal sense, we are linked by mutations and common challenges and just like I'd toss a raft out for any one of them, I feel pretty confident there are safety options available for him. I remember going off to college and feeling bad that Bob never had that opportunity. I look forward to the day that LFS is a more easily managed condition- like diabetes and conferences like this one are a huge step in that direction. There was realism, there was hope, and there was family. And as Phillip and I settled into our seats on the plane in Columbus, I felt sad to be leaving because in our world- you never really know which visit will be the last. No one does really. Then the captain came on to welcome us aboard and introduce himself, Captain John Connolly. Which is my dad's name. And I thought what are the odds and knew we wouldn't be needing the life raft today.

Day 3 of 21. Work Wednesday.

I have not "worked" in years. I am a professional volunteer and a wife and mom. That IS enough. There were years in between becoming a mom and now that I wondered IF it was enough. I'm pretty independent, it would be nice to bring some $ to the table. I am lucky that I do not need to have a job for us to get by. Especially here in Hawaii. Yikes.  I used to cook, clean, transport, help and the "savings" was equivalent to a full time job.

Wednesdays are "short" days at school. The kids get out early for some silly antiquated reason. I usually spend my mornings picking up and taking care of business. Sometimes I go and hang out with my sister in law and her boys. Business is mostly work I do for the nonprofit Living LFS.  It's work I'm proud of and happy to do and it is important. Li Fraumeni Syndrome will never be a worldwide epidemic since less than 5% of all cancers are linked to hereditary causes, but it is absolutely a worldwide disease. The internet gives those of us with these rare conditions a chance to connect and support each other. It is pretty amazing.  I moderate the support group, run the Facebook page and try to keep things rolling smoothly. In an organization that is for people facing cancer after cancer, run by people facing cancer after cancer- this is pretty tricky. But these people are amazing and I have help from some wonderful mutants. There are ups and downs in the mutant universe. Sometimes all we can do is just be there when good friends are faced with impossible situations.

 I rest up of for the after school routine. I pick the girls up- come home, they do homework for an hour and we are off to voice lessons. After voice lessons I run home, swap the 2 singers for the soccer player and take her to soccer practice. This Wednesday, my SIL made us dinner, which was fabulous- and no small feat. It also means one less night of fast food- because with Phil's schedule lately we tend to just grab. Not ideal but we do what we can.

Soccer practice is at my least favorite field. I've spent much time there, baseball, archery, flag football, soccer. There are about 10 other teams practicing at any given time. Parking sucks, the bathrooms are gross and coach requests we sit near where they practice- which means not in the car. On chemo week- lugging the chair from the parking lot out to the soccer field- feels like a lot. Today I'm lucky- a couple teams aren't practicing and I score a parking spot nearish the field.

 I appreciate that the coach is a volunteer and old Jen would jump in and help. Right now Jen is tired and would really like her youngest to play soccer because she loves soccer and the activity is good for her. But if coach keeps annoying Jen, Jen will pull child from this team and pay for lessons at the Kroc center. I need to look into that again. It's bad when the third person comes out. I want to scream- I am not THAT parent. I am engaged. I am present. That is all I can be right now is present- and it IS enough. Coach yells questions to parents. I purposely yell wrong answers. Perhaps he will be deterred by sheer ignorance and incompetence. Apparently not.

The girls are rewarded for their efforts with a grass fight. The field was finally mowed and there are huge piles of grass everywhere. We don't have fall per se, so this is as close as they get to mounds of leaves. I start to itch just watching them. But the sky fills with burnt orange and pinks and the sun ducks down behind the trees and the girls are giggling and I think, it isn't so bad.

Mut-landia

We just wrapped up the girls' production of Little Mermaid Jr. It was fabulous- and since it is my favorite of all time- I could have watched it over and over and over- but all good things must come to an end.  Kiera played Carlotta, a jellyfish and a lilypad. Lily was Arista, a mersister and a lagoon creature and Bella was a sailor, an unfortunate soul, and a butterfly.

They all had an amazing time with this production and with the cast and crew. Other moms would come and tell me how sweet they were( I try to avoid back stage- it is far to chaotic for me- which says a lot since our day to day livelihood is anchored in chaos.) One mom said Bella would rally the other sailors for a group cheer before each performance.

So on the Sunday evening after the last performance, Bella curled up in my lap and sobbed and sobbed and sobbed. Now Bella is just discovering her dramatic side so part of me wondered if this was overacting or actual heartbreak. Either way- I was glad it had been such a good experience for her that she would miss it.  Yet the next day I woke up with a headache and her nose was stuffy. Bella gets weirdly emotional before she gets sick. The little petri dish had snot bombed all over me! And here I was with 3 days to get everything together for a mutant meeting in Portland.

I chugged OJ. I took extra vitamin c and zinc. I rested and drank stress tea.  And I knew Monday when my head throbbed and my throat tickled that the petri dish had done it again. On Tuesday, I got the kids off to school and climbed back into bed. Somewhere around noon, I felt a hand on my head.  Phil grabs the thermometer and I try to yell no, but that would require energy I just don't have. 102.3. GDMFCSSOB. Not only have I lost a day of prep for the mutant meeting, I now am getting carted into clinic for a fever work up.  The up- side is that Lily has her endo appointment at 2, so somehow Phil is getting a 2 for 1 Tripler deal.

As I am trying to pull clothes over my hot shaky mess of a body- I get a text from my mom. Her mom radar is spot on- again. I text back yet in the fever haze- never hit send.  By the time I get to the hospital I hear my phone pinging and buzzing- apparently she appealed to the mutants to see what was up and they are now rallying in force. The nurses draw blood from several locations and plop me in a wheelchair to send me down for a chest Xray. Phil and Lily finish up with her appointment and come find me shivering in the frosty annals of radiology. Finally they call me back and the tech apologizes for the wait- she's the only woman around and didn't want to subject me to the boys.  She helps me out of my shirt and points out that I am seriously feverish. Yep hot mess- that's me. We finish and head back to clinic. I just.want.to.sleep. My counts look good, my onc comes in to talk with me.

We agree that it's probably just a virus, we do a strep swab just to be sure. He wants to know about this trip- THE TRIP- Mutants take Portland- Mutant mixer- Hugging mutants-Mutlandia and I can tell he is not keen on me flying. I ask him what his worry is- he says well- it makes them look bad to put a sick cancer patient on a plane. I laugh- OH I though you were worried they would freak out and think I had Ebola or something. His eyes get wide- I didn't even THINK about THAT. Oh great. Not to give him another reason to keep me locked down. He does not think I should go.  One of the team comes in and helps problem solve. We all decide that the decision doesn't need to be made right now- I still had 24 hours to miraculously lose a fever and open some airways. Lily finally gets to check out the chemo bay- and is pretty impressed with the little tvs.  We finally get a few scripts and head home.

By Wednesday the fever is gone and the congestion is trying to break. I lay under my neighbor's steam machine slathered in vicks.  Mutants are checking in at regular intervals. I can breathe out of one nostril- that seems good enough to fly in my world. Phil keeps asking me what I think, I keep asking him what he thinks-I am getting concerned texts from family and mutants alike.  My neighbor pops in and out and it hasn't even occurred to her that I might stay-plus she knows me- you'll get more rest on a plane and in a hotel room than you will here with 4 kids she says. Especially with the storm coming.  And that's true- my husband in his constant efforts to make me comfortable had gotten us first class tickets. Wait, what? Storm? Yeah- there is a hurricane heading towards Hawaii.

These two days were supposed to be dedicated to final meeting prep- and as somehow seems to happen with LFS and life in general, those days were pulled out from under me. My heart hurts so severely at the thought of missing my friends, I can barely breathe- but that may just be a virus.  One of my very dear mutant friends will not be joining us at the meeting because shortly after she filed some of our incorporation paperwork she was schwacked with a cancer diagnosis. As she lays recovering from major surgery- she texts me comfort- when she is personally feeling the loss of not getting to hang out with all of us after being the driving force behind bringing us together.

My cousin - who has been an advisor, a friend and an inspiration during some of my roughest times- chimes in that there is no stress- I can cancel at the eleventh hour. But I don't want to cancel. I may not be much use for a couple of days- but I'm pretty sure Phil needs this as much as I do. SO I throw a few items in a bag taking more time to make sure all my medications are packed than toiletries. And we head for Portland. Because this is what it's like Living with cancer, Living with LFS and just LIVING. I could not do it without the support system I am lucky enough to have around me- and sometimes the best medicine is just Living.

Living LFS

Have you hugged a MUTANT today?

I have. 5 years ago I learned that not only did I pass a dreadful genetic mutation on to one of my children, all four of them had it. Just like me.  I think of how I never got a chance to meet my grandfather. How my children never got to meet my dad. I want to meet my grandchildren.

Our bodies don't fight cancer like "normal" people's bodies do.
Where we only have one cancer fighting p53 gene, Most people have two.

So cancers grow and grow and grow.

Sometimes two or three at a time. Sometimes in itty bitty children. Sometime more than one family member at the same time.

Families should stick together. They should NOT get cancer together.
Children should NOT get cancer.

Almost 80% of pediatric adrenocortical tumors have mutations in the tp53 gene.  Not only did Lily's tumor have mutated p53- all of her cells do. She is a mini-mutant. It means she is at much higher risk for developing cancer again. So we screen her and hope we will be lucky. That she will be lucky.

The other kids have the mutation. We have been lucky so far. We screen them and hope we will be lucky. That they will be lucky. Those that know us know we just finished this routine. It's stressful. But we do it because it's our best odds. It's a part of living with a hereditary cancer syndrome.

Lily's drawing of us walking. It's in our genes. 

50% of people with Li Fraumeni Syndrome, mutants- as we affectionately call ourselves for the mutation in our genes, will get one cancer before they are 30 years old. I was lucky. I beat the odds. I was 36 when I got my first cancer.  My brother wasn't so lucky. He was 15.

In 2009, I tried to find others with Li Fraumeni Syndrome online. Facebook connected us, this rare group whose sense of humor was as twisted and warped as their DNA. Yet I am convinced, these mutants exemplify the theory that adversity only makes us stronger. They are truly the most resilient, positive group of people I have ever met. I heard stories just like mine. I heard stories more heart breaking than mine. They researched for me, with me. I researched for them.  They cried for me, with me. I cried for them.  Then we laughed together. We grew stronger together. We talked about a need in our LFS community, a need for community. They all were Living LFS with me. We were Living LFS together.

We finally got to cash in years worth of virtual hugs at a LFS Conference in Boston.  Real Hugs. Real Mutants. People who understood what it was like to have Li Fraumeni Syndrome. And they were living with it. Even though LFS is rare, our stories are not. In the LFS community the stories are far too much like mine, generations of cancer, far too many kids with cancer, way too many cancers.

www.livingLFS.org

I am proud to be a part of a new organization that will focus on bringing mutants together to share those stories.  This organization is LivingLFS.  I am passionate about helping mutants find the information and support they need to make living with Li Fraumeni Syndrome easier. I sincerely hope that someday we can truly make an impact and support research that will change the fate of LFS. We are already planning our first mutant meeting in Portland this October! Just to keep life interesting between raising 4 mini mutants in a military family in between chemo treatments!

In order to do this, we needed funds for a meeting space and since the Team Mallory Shirt was such a huge success- we decided to give t-shirts a whirl for LivingLFS through a CustomInk Booster. And it worked! It's working! We already have enough support to cover the meeting room and even some snacks during the meeting. I am so proud of the community and support for mutants, especially since it is such a rare syndrome. If you would like to show your support for LFS and our mission of supporting those with LFS and raising awareness for this disease, please check out the link below or just tell someone if the subject presents itself that you know someone Living with LFS- because that could really make a huge difference to someone with LFS! Have you hugged a mutant today?

https://www.booster.com/livinglfs

Healing

Being in the hospital is one of the most torturous experiences.  By all recent comparisons, this stay was a 4star excursion. I had my own room and Phil stayed the nights with me. Not the romantic 2 night get away that I have been dreaming of, but we survived it and that's all I ask for these days.

I absolutely do not know how non medically savvy people negotiate hospitals. I feel like at every turn I am telling someone how to do their job in respect to me. It's exhausting- this continual advocacy. Some say it's because we are in the military health care system, but I think that is a side effect of a bigger problem. Jaime sat, visiting with me in my luxurious suite with a perpetual look of horror as I explained this was the nicest room I'd ever been in here at Tripler. She asked when the last time I was in a private hospital was. Never. Not me anyhow. I've visited friends in private hospitals. I can overlook the bells and whistles for quality care. More often than not, quality care these days feels like it merely doesn't kill you.

The preop visits to the surgical center usually horrify me. They are aggravating in that not only are you a bundle of nerves- but you are sitting in a room with other nervous folk waiting, waiting waiting to tic items of a checklist that cumulatively take a grand total of a half an hour, yet the visit drones on for close to 3 hours. You don't meet with any of the people you will be seeing the next day and they always deliver disappointing news like- you cannot eat after such and such time and oh- be sure to stop by the pharmacy to waste another hour of your time to pick up some nasty concoction to drink and prepare the bowels fro surgery. Oh crap I forgot about the bowel prep. More so I filed it away under something one doesn't want to think about.  To add insult to injury you have to start cleaning the pipes at 2pm the day before.  So the last dinner turns into last lunch and each bite chewed is chewed with the dawning realization that it shall be but a memory in a mere hour or so.

Whether Jaime was the good luck charm or slathered over my chart was some cryptic have mercy on this poor woman who contrary to what is IN this chart does NOT enjoy pain- the day progressed fairly painlessly. I even managed to squeeze in an annual well woman exam while Jaime waited for my pharmacy number to be called. Because amidst all of the appointments in the past month leading up to this surgery- it failed everyone's notice that I was overdue for a pap. Either way- it was taken care of.

We arrived home, I drank the lemony flavored make you poo goo and dreaded the next events.  Since I react to all kinds of things- I don't do the weird pre surgical wipes which cover you in a bacteria fighting film and supposedly cut down on post op infections.  I have theories on this and infection control in general- but I will keep them to myself. I generally am relieved to be first case as the assembly line processing of the ORs always makes me wonder. Either way- I shower night and morning before surgery. This whole not having hair thing means less toiletries for the hospital and not having to worry about crazy post op bed head. The sun is still soundly asleep when we begin our trek to the hospital. And less shaving for the OR team- woo hoo.

Despite my several pre op appointments and pre surgical arranging- no one is qualified or has the appropriate supplies to access my port in the OR. After not 1, not 2, but 3 IV tries- I have an IV barely hanging on between my ring and pinky finger knuckles. Obviously it doesn't matter that all blood draws will have to be below that( I guess out of the webbing between fingers) and I have an entire arm that cannot be used due to lymphedema risk- they have fooked away my good arm's worth of veins. It is too early to call the VAD team or wander down to oncology and just have them access my port. I shake my head. Fairly unacceptable. Had I not gone over this with pre surgical people- I would have just gone into oncology and had the damn thing accessed the day before. Instead I now have a greenish brown zombie arm as the multiple vein blows heal.

The only reason I dealt with it is because an IV is needed for versed. Versed is my favorite and the only reason you can get me anywhere near an OR. Within a minute of that injection you are waking up in recovery and everything is a little achy and foggy.  I woke up with 2 IV's. Both of which came out within hours. One as I tried to sit up, I look down and blood is dripping out of my hand and there's enough meds going on that you just look at it like- hmmm that's probably not ideal. That is another pretty green brown zombie bruise now. The other had clotted.  I spent many hours that night as a nurse whacked my hand and arm trying to find a viable vein- consistently ignoring the one I pointed her to and finally after Phil kicked her out of the room and another nurse came in- did they get blood from the vein that I had pointed out. Advocacy is exhausting.  I had decided then and there I was out of there as soon as humanly possible. Saturday afternoon was the earliest they would consider letting me out- so by Saturday morning I was asking to leave.

Any surgery sucks. Abdominal sugary has it's own set of not niceties. Standing up sucks. Walking sucks- as things get moving again- it most definitely sucks. Waking up and feeling like you have to sneeze sucks. As you try to prop yourself up to grab the pillow to hold against your tummy so your intestines don't get blasted across the room. Ah good times.  The first day home alone with the kids- I decided watermelon sounded good. So bella put the watermelon on the counter for me. The leverage needed to slice said watermelon was more than I had- so I asked Kiera to please take care of it. I went upstairs to nap- because on narcotics- leaving kids downstairs with a big knife and a watermelon seems pretty acceptable.  After a short nap- I return to Kiera- several bowls of weirdly sliced and crushed watermelon- a mop, a sticky floor and her brother sitting there eating watermelon while she giggled. Later we find out that she ignored the watermelon and it rolled off the counter and splattered everywhere. SO she put the smooshed watermelon in the colander and rinsed it. That melon is what her brother gnoshed on. Hence the giggling. She was on her 3rd round of mopping but from what I can tell- In true Gallagher fashion- she was just pushing watermelon juice around.

Today has been a week post surgery and I am starting to feel human again. We've had a couple hurdles. I'm on blood thinners(fun nightly Sub Q shots) and antibiotics.  I can lay fairly comfortably, sit fairly comfortably and stand up pretty straightish. I am very tired. After 4 c sections, I knew what to expect and my expectations were a little high. This led to many a melt down while Phil assured me I was doing fine. A 15 minute phone call should not require an hour nap- I blubbered. I am a human paperweight I cried as the fan blew a few of the girls get well cards around the room- and I'm failing at that. I'm very antisocial post surgically. It's probably best. I know that next week will be better and the week after that better and then back to the chemo routine. And that absolutely sucks. Getting better to get knocked back down. And then the sun comes up over the palms and the clouds drift by and I feel good enough to sit outside for a half an hour and enjoy it. And the kids give me hugs, gentle, careful hugs and kiss my stubbly head and that's why we get up and do it all over again. These wounds will heal and hopefully lead to something better.