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

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. 

What a Trip!

Its hard not to feel like every time we plan a trip, something goes drastically wrong. But then again, if I step back and look at it- things do happen for a reason. We had a wonderful week in California and by far the best part was all the love we received from family and friends who jumped on planes or in cars and made the trek to come spend just a bit of time with our chaos.

It did my soul so much good. Living on an island makes us pretty inaccessible at times- so our trip gave us the much needed reprieve from island fever and the whirlwind of scheduling that swirled around us. It gave us time to just be us and reminded me of how important people are in my life.

We took the kids to play in snow and build a snowman.

A very tiny snowman.

Despite a cold and the cold- Bella still had fun- even taking a nap on the side of the slope. 

The littles were content playing while the bigs enjoyed snowboarding at Mt Baldy. yep we chose the spot exclusively because of it's name. 

But most importantly we got to visit with our friends the McCormick's- the type of friends you can fall back into conversation with like no time has passed and thoroughly enjoy just hanging around with. 

The next day- our friends since high school Rob and Ang brought their 4 beautiful kids to hang with us in Newport Beach. I loved seeing our past and present connect and form these new relationships based on our friendships from long ago. 

We laughed and learned there are people who will refuse to take your picture for religious reasons but  that didn't stop us. Again my heart was happy.

We then headed to the happiest place- not because of a mouse- but because of family. We got to spend time with grandma and had the amazing bonus of some cousin time!!

There was ice skating at a rink in Downtown Disney- so they got to check off another winter event!

My mom got to see that I was in fact OK!

It IS a small world- Best group pic ever!

The minions. 

And finally, ended the trip with an amazing dinner with new friends. 

Back to Chemo!

Facing it Head on

A few months ago I took the girls to their open house at school. As we sat in Lily's class the room, everything started spinning. This had been a side effect of chemo- if I overdid it, sometimes I'd get dizzy.  But this was different. As we walked out the door I felt like I was falling over.  I grabbed onto Lily and she steered me to the car. I sat there getting my bearings and finally called my neighbor to come pick us up.

Last month I woke up and felt a similar dizziness. I threw in a load of laundry and within an hour the room was spinning. I laid on the couch- if I held really really still it was almost bearable but the nausea grew. Shortly I was vomiting. It became an ER trip and I felt too horrible to even panic when they refused to give me an MRI and did a CT instead. The CT didn't show a problem- so I was given fluids, dramamine and sent on my way. It took a week before I felt like the dizziness wasn't going to pop up. My mom suffers from vertigo, so I really just chalked it up to another win in the genetic lottery for Jen.

At my next chemo, we talked with my onc who said a brain MRI was probably a good idea. Then I ended up with the flu. Fever, chills, sniffles, overall misery. By the time I felt better it was time for chemo again.  I figured I was in trouble for not getting an MRI when the nurse took it upon herself to schedule it for me. The appt was 2 days later,  Christmas Eve.

Perhaps forces aligned to allow us a peaceful, happy Christmas. Phil and I are horrible with surprises and secrets. Both of us have been really feeling the weight of permanent chemo and it had been a rough couple of months, so we decided to plan a family trip and surprise the kids with it at Christmas.  Since I don't fly well- it had to be close and the closest stop is California. So California it was. I bought each kid a cold weather outfit and printed out a card that let them know we were going to Disneyland and to play in snow- I wrapped them up in boxes and put them under the tree. The excitement when they opened the presents was totally worth it.  But the next week was going to be one of the toughest.

On Friday I got a call from a radiation oncologist. Unfortunately I have 2 tumors on my cerebellum, the part of the brain that controls balance. So we now know the cause of the vertigo. My cancer is misbehaving.  We can't know for sure if it is breast cancer metastases unless we do surgery and that could have some pretty big repercussions- but the docs feel pretty sure it is breast cancer.  This week we met with different radiation oncologists, got to see the pictures. Never a good feeling to see a grape size spot in your nugget.  Neurosurgery was consulted and pretty much decided that surgery is too risky.  The recommendation is gamma knife radiation.  We got to see parts of Tripler we'd rather have not visited. We also got to see the Cancer Center of Hawaii- since they have the fancy gamma knife machine. I really like the rad onc we saw there, she even cited an article about gamma knife results in patients with LFS. As much as I dislike the idea of radiation and worry whether or not it will work in my already mutant cells- it seems to be the best option at the moment.  But no plan is set yet. Friends called in favors for me for second and third opinions. My brother in law graciously consulted his bosses at Mayo Clinic. I've read papers. I've lost sleep. Rehashed symptoms in my head- pun intended.

Today is the first day of a new year with a lot of new unknowns. I know this- I love my family and friends dearly.  We will need some support in the next few months, I just don't know what or how yet. We're not sure what's ahead but we will keep facing it one step at a time and living along the way. So today we leave to try and relax(ha!) and gear up for some pretty big hurdles. But I've heard some positive things from some respected docs and we will face it head on.

Sometimes.

Sometimes it's hard to be Positive.

I've tried to write dozens of times, but I like to keep it positive and I've been struggling.

Sometimes when you have chronic illness you teeter between wanting to be seen and how utterly invisible you become.

Sometimes when you are sick, everyone around you learns to function in the disappointment.

Sometimes when you don't feel well, you think of all the wonderful things you want to do when you feel even just a little better.

Sometimes you are crushed when that time doesn't come.

Sometimes I feel bad that my family is impacted by this crazy lack of energy.

Sometimes I feel bad that me friends are called in to help more than to play.

Sometimes Bella runs around chanting that she believes with a bell that does not ring. sometimes she hits the wall.

Sometimes Lily makes me books and tells me she hopes I feel better- every time she sees me. Her moods are like a yoyo.

Sometimes Kiera cleans the entire house. I hear from other parents that she is constantly helpful and offering to help back stage.  She understands. Or at least is acting like it. She washes her hands 50 times a day.

Sometimes Phillip will hug me and fills my water. He'll play piano for hours and switch gears every time I yell a new song at him. He hides.

Phil is my everything. He cooks, he shops, he cleans. He is exhausted yet he gets it done. He comes home with new rank sewn on his flight suit and a printout that says it's so.

I wanted to be there. I want to pin the silver leaf on his shoulder. But there was no ceremony. Such is our life these days.

Parties and pomp and circumstance swirl around us. And yet somehow the important bits get glossed over. It makes me sad because he works so hard. At work and at home. He notices. He would never say anything.

Sometimes my heart breaks most for those around me.

Sometimes I feel like it's my fault.

Sometimes I try to write and find the positive. But sometimes it's just too hard.

So sometimes I just stay quiet.

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.

Potty Humor

I'm not a thrill seeker. I never really have been. I love a laugh, but not much of a practical jokester. I can't stand surprises- perhaps because I've had my fair share. I'm a bit of a control freak.

Thursday was not an average day. It was day 4 after chemo. I was feeling shaky and over all blah. The constitution was questionable. My friend Wendy, who just lost her daughter to cancer 2 months ago was on her way over. She's been coming by once a week to cook for us. I am profoundly grateful for so many reasons although she continues to tell me it's good for her.  It gets her out of the house, we get a chance to talk and keeps me from cutting or burning anything. Which seems to be a real problem with me lately. Case and point....

The other night we were putting dinner together. Phil was leaning on the counter by the trash.  I was experiencing the post chemo, nothing tastes right phenomenon and was cutting up a piece of peach to put in my water because lemon or lime just sounded too acidic. Since you technically have to be careful with fresh fruits and veggies during chemo- I skinned the peach. I held the peach piece in one hand with the knife and skin in the other. Now I would also like to point out that skinning a peach when you have tingly shaky hands is probably not the best idea- but is challenging in and of itself as the little buggers are slippery. So I am concentrating on not letting go of the slippery little devil and go to throw the skin away- in essence jabbing my husband with the knife and dropping everything everywhere.

Phil yells ouch. One of the kids says "what the heck" and I experience that horrible sinking feeling you get when your body doesn't do something that you thought you told it to do. It flipping sucks. I stood there holding on to Phil sobbing(me sobbing- not him- he was fine and actually laughing- well despite a small mark on his finger- fine becomes a relative term the week after chemo)- because it's one thing when you burn the cabinets, or your finger or arm or cut yourself- it is entirely another thing when you stab your husband out of the blue. I've always been one to shoo the kids out of the kitchen when I'm cooking- there's less collateral damage that way- but especially now- if I am anywhere near the kitchen they make themselves scarce. It's self preservation really. Kiera wanders around doing Bon qui qui imitations whenever I go near the kitchen- I will cut you.

They quietly slide knives away from me. Or they jump out of the way when I open the knife drawer. It took a few days before I could laugh with them. But I'm back in the game now.  Perhaps it is because the shakies are starting to subside. Perhaps it is because sometimes all you can do is laugh and if you can't laugh at yourself- you shouldn't be laughing at anyone else. 

Recently the world mourned the loss of Robin Williams. It brought to light many issues about depression. Depression is a huge issue across the board. It's a huge issue with those facing cancer. It's a huge issue for those living with any debilitating disease. It's a huge issue for those who are depressed or love someone who is. I've struggled with it on and off my whole life and I know my parents have and I worry my kids will. Like any disease- it can be treated, it needs to be watched and sometimes laughter is the best medicine. But sometimes laughter is a bandaid on gaping wound. Unless you stitch up the underlying problem- it just won't cut it. No pun intended. 

Wendy's husband Pat started doing stand up comedy as a way to deal with their daughter Haley's illness. To me it makes perfect sense- but I am also someone who embraces finding the humor in less than funny situations.  To me, humor is the stitch that closes the gaping wound. In order to fix it- you have to uncover it, see it for what it is and attack it. The process can be painful- but at times laughing about the parts you cannot control is better than crying about it. 

I've never been to one of Pat's shows until the other night. We were just finishing up dinner- the whole family- in laws and cousins and the phone rings. It was Wendy. Bella was bopping around and tries to answer it- to no avail. She calls Wendy back, it goes to voicemail. I figure Wendy has had something pop up and needs to cancel our upcoming visit this week- so I was not prepared to hear her ask me if I want to come see her husband's routine- they are right down the road at the new lounge and they could use a few more audience members. Now. Or soon. But it's right down the road. 

Spontaneity has become a way of life. But Phil took one look at me and knew I was torn. Here we were finishing dinner with family, with my sister in law- who also is kind enough to cook for us weekly and then some and has been there to help with all kinds of less than desirable tasks. But also I know that there's probably a grand total of 2 people at the local lounge and I really would like to support my friend. Of course there is the dilemma of my constitution- but surely there is a restroom there. Phil has had an epically long week and decides what the heck- lets go- He finishes his last bites of dinner- delegates the after dinner chores and we go. 

Of course 5 minutes in- I know I need to use the restroom. Of course the restroom is right next to to the stage. And I realize why potty humor is so damn funny. Because it's a fact of life- everybody poops. Life is full of shit. Normal- runny- inappropriately raging at inopportune times. You can choose to pretend it's not there and go quietly about your business- yet at some point there will be no fighting it- you will have to walk to the bathroom in front of a room of people and hope that the laughter is perfectly timed. 

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

The EVERYday challenge of LIVING with debilitating diseases

It's AUGUST and I am already dreading October. I'm dreading the pink washing of "awareness" that comes with Breast Cancer Awareness Month.  Millions upon millions of dollars have been raised for breast cancer research, awareness campaigns and survivor support. Treatments are better. Awareness is Greater. The disease is being caught earlier and being treated earlier. But the cure is elusive. I know these things take time- but as the world readies to cloak itself in PINK in October, the clock ticks for me and many others who are fighting the battle with the disease. We know a little more about who has a better chance at winning the war- but there is the undeniable element of luck.

When I first heard of the ALS Ice Bucket Challenge I was mostly annoyed. I tend to get annoyed easily and especially in the heart of chemo weeks on the tail of a summer that never really developed.  I was annoyed again the people just don't GET it.  If you are dumping ice on your head and not donating to charity- how does that help anything? It seems only to raise awareness that buckets of ice are cold and people will do crazy shit instead of donate to charity. Yet somehow in the past few weeks- over 55 MILLION dollars has been raised for a great cause. SO as it turns out people like to do crazy shit and can be compelled to donate too. For ALS is a horrible disease to have to face, to know that you have a family history of something and you just have to wait for the inevitable, secretly hoping you might be the lucky one. Watching those around you suffer,  wishing you could ease their pain all the while feeling guilty for wishing you could escape the fate they are not so lucky to.

The ALS Ice Bucket Challenge showcases the power of social media. It shows the power that awareness can bring. It HAS raised awareness of a rare disease and much needed funds to help support a community that is too busy fighting to LIVE. It highlights the importance of genetics and need of research for rare diseases. I know ALS families must cringe and dread the ever present cancer awareness and fundraising campaigns- while they watch family members deteriorate with few options to assist them. Most people not even knowing what Amyotrophic Lateral Sclerosis is. I hope sincerely that this campaign changes so much for these families. Just as the March of Dimes changed the face of Polio and has gone on to care for a greater need, I hope this changes the face of ALS. Living with debilitating disease is traumatic enough but to live it with no one around you truly understanding what you are facing and how it impacts your day to day life- forever- unless they have lived with it.

Living with Li Fraumeni Syndrome in all senses can be a debilitating disease. I have seen it destroy families and relationships and dreams. It can rob people of their physical and intellectual presence- essentially robbing them of who they are- much like ALS.  It changes relationships. It takes away birthdays and anniversaries, college dreams, hopes of having a family or a normal day. It robs people of savings or the ability to save. Time is spent on 24 hour care and unplanned surgeries and doctor's visits, at a minimum preventative care.  I consider myself one of the lucky ones- I didn't face cancer until I was 36. I had 36 years of living, I hope luck holds out for more. Many of those years were dedicated to others fighting LFS cancers, both family and friends. But many of them were care and cancer free too. Each one leaves an indelible mark on you. Each one is a little harder. But through those battles I see strength and I choose to see the positive. It isn't easy. It is damn hard when you watch a 3 year old battle multiple cancers- yet 5 years later when she is defying the odds- you retain hope. It is infuriating when friends battle the same cancers over and over- their lives being put on hold, hoping to be able to live. It's humbling to see others who have lost so much, give so much back to each other- because they know how hard it is.

There are hundreds of rare diseases and special causes out there. Each one DESERVES millions of dollars in funding. Most don't get it. I don't resent that, I appreciate it. Those that get funding nationally are those that post the greatest risk to the most people. Rare diseases don't fit the bill. Until you have a rare disease- then it fits every bill.  ALS, LFS,  Adrenal Insufficiency, Type 1 Diabetes,  childhood cancer, and so many more. The people most affected by these diseases are the least likely to have the resources to start fundraising campaigns and devote time to awareness. It is the outstanding people that we touch that are moved by our stories that can really help make a true difference in our lives. A lot of times it is just the luck of timing that determines the success of a campaign.  I know I feel exceptionally lucky to know so many generous caring people that have helped us and many other causes.  I think when we judge less and compartmentalize less and come together more as a community, we can make a huge difference- one rare disease and one challenge at a time.

Don't Drive Angry Phil

Every time Phil pulls into a parking spot I cringe. He's never hit another car while parking but he seems to be a little more aggressive at squeezing into tight Hawaiian parking spaces than me.  I'm constantly yelping as he swings the van around and he laughs every single time.

It is one of the many ways chemo has affected me. I'm jumpier, more off balance. I don't mean to question his skills, but I do find myself critiquing his driving, a lot. I feel bad because his commute is pretty brutal- at least an hour each way- bumpah ta bumpah, sun in face bra. I often quote one of his favorite movies, Groundhog Day-

Don't Drive Angry Phil!

Yet he doesn't really drive angry, he just has much better skills than me- especially chemo sabe me. So one night we are sitting to dinner- recounting a fun story of how our 14 year old boy child decided it was ok to take the van for a spin around the block. I was not amused at the time- but in our house- as it was in my house growing up- public ridicule is a really good deterrent. The discomfort of facing the people you affect is an important life lesson. So we were laughing at his joyride and Phil was nice enough to share an anecdote from our youth. 

Now mind you- my brother turned 16 shortly before he was diagnosed with a brain tumor. I do believe he may have actually taken the official driving test post op with a baseball cap on to hide the scar. I'm pretty sure issuing driver's licenses to brain tumor patients has always been frowned upon- but as my mom always says- you do what you gotta do. I - in my 14 year old wisdom, refused to get into the car after a few episodes of crazy driving. Of course I had witnessed mild seizures and some of his memory deficit at home, but all in all it was standard 16 year old driving and standard sibling rivalry in a non standard situation. Yet I fell on my proverbial sword of traffic safety and concern for pedestrian welfare. 

The irony lies in how angry of a driver I was for the next several years. As I recovered from the loss of my brother, thrown into the brain tumor drill again with my dad- I was an angry teen driver at it's worst. And Phil bore witness to a lot of it and specifically one instance he decided to out me in to our children. The long and short of it involved me tailgating someone with much better brakes than my 82 Honda  and a swerve , mounting a curb and almost taking out a fence. Yet no cars, Jens or Phils were harmed by the conclusion of this tale.  I will leave the real story for Phil to tell- as it really is his- but will say the kids were in tears with us laughing at our past mistakes. I was also showing the 14 year old that we could relate, that we were human and that at the end of it- I learned to scale back the road rage and limit my law breaking to speed violations.  

The thing about cancer, or injustice, or pain, is there is a certain element of loss to all of it. A loss that is out of our control. It is very tough to relinquish control. To learn to accept the feelings that come with loss of control- the grief, the anger, the acceptance.  Some people never learn to regain control and hold out for others to give them direction. Some people take this loss and use control over others to fill it. Some people realize the loss is part of them, learn from it and use that to move forward. 

In my teens I liked to drive fast. It was a risk I thought I could control. My dad taught me to drive, mom's nerves couldn't handle it. After bearing 4 children who continually test their mortality- I'm with my mom on this. BUT back then I was a different girl, we were a different family. Dad would take me to the new neighborhood way down Smoky Hill Road. It was the skeleton of a neighborhood- just roads, no houses. He would let me take turns and try to stop and start and he would yell out situations- A car is coming at you and a dog just ran in front of you! I said I would swerve. He said I just failed my driver's test. If I swerved into the car- I might kill myself and everyone in the car. If I slammed on the breaks, I might fishtail to the same result. He gave me scenarios and possible results. Rain, snow, black ice, falling trees, other cars. I learned about defensive driving and planning ahead. I learned to predict problems to get a lead turn on reactions. 

I would get in the car and we would start with 12 points. When I lost all my points, the lesson was over. Even when I wasn't driving, we were always tallying points until it became a running joke. I'll give you two points for the kid on the bike- no way- he's in the crosswalk that's 5.  It that moment  we were tallying the value of life in relation to the rules of the road. All the while, he was teaching me to be on my guard- he would say there's a kid there on a bike to your right- if a car were to turn in front of you right now- where's your out? And we would talk about it. I learned to think about actions and reactions and to be prepared. 

Yet I wasn't prepared for my first ticket. It was spring break the year after dad died, Phil and I had gone to visit friends in Arizona. I was hauling mail.  Between the two of us- we could expertly spot cops hiding over and under over passes. Say that three times fast. Well we missed one and I was tagged going well over 90 in a 55. I was pretty worried that this was going to be the end of my driving career. The cop knocked it down to 80 and gave me the option of Driver's School. I would have to pay for the course, the speeding fine, but it would be no points on my record. Well glory be if I hadn't learned that come hell or high water I better keep points off my license. So the next day I called and enrolled in the class. 

The location was inconvenient, the time was inconvenient and I could tell the second I sat down in a dilapidated inner city classroom that everyone there felt the same enthusiasm towards being there. When this soulful woman walked in and asked who was excited about being here all of us looked around to see who exactly might take the bait. Not a hand went up. She smiled- me neither she told us- she had better things to do- and she knew we all did as well but something put us together in this room and she was going to be darned if she didn't do something with it. I think at that point everyone was as nervous as I was about the next 6 hours we were going to be spending there. 

She had us get up and arrange the desks in a circle so we could see each other. Then we went around the loop and told why we were there. For each person, she would ask a question- a really simple question like- to the guy who ran into another car in a school zone- what would you have done differently- he said- probably not eat that second cheeseburger. As it turns out- he was unwrapping a cheeseburger- and a glop of ketchup fell into his lap and while he looked down-slam! So she talked about distracted driving and asked everyone who was distracted when they got their ticket to raise their hand. Everyone did. We talked about life and anger and the big picture. We talked about zooming to get there 1 minute sooner- how important was that minute - because 1 minute could become 30 minutes late if we were pulled over- or never if we were in an accident. She reminded me of dad. She was no  nonsense- this is how it is- don't lie to me kinda lady.  Everyone in that room had a story and their story impacted why they were there at that moment and she had us talk about it. I half wondered if I had walked into a candid camera sponsored support group by mistake. 

When we had sufficiently been counseled as to our impact on the driving world and the larger world as a whole, she handed us an exam booklet. When we were done, we were free to go. It had been barely 2 hours. But in those 2 hours what I learned was more than defensive driving. I learned about actions and reactions, I learned that my actions have consequences but seemingly bad consequences aren't always bad. I learned that complete strangers can come together to help each other. I learned that there are people out there who are amazing and in their little corner are making a world of difference one bad driver at a time. This is where I learned that it's not so much what you do, but HOW you do it that makes a difference. If you are passionate and work to help other people make themselves better, not only will they be better, you will feel better. It is one of the many experiences that taught me people are angry for a lot of reasons and if you take the time to find out why, it makes a difference. It also taught me not to drive angry!