TEAM MALLORY SHIRTS

Years ago my dear friend Gina from across the oceans- did a remarkable thing for us- with a Tshirt. I had no idea how many supporters we had and it was such a boost to see pictures of all our friends all over the world in a Tshirt designed by Hope Friedman- just for us- representing US! Here's the original story TEAM MALLORY

It's hard to believe that was years ago. SO many unknowns- ups and downs and here we are!

It was completely out of my comfort zone to have a tshirt- to let friends help- but I learned so much and we felt so much love- THANK YOU.

As we go into this next round of unknowns- we've collected a few more friends along the way. I am so grateful for the kind giving souls who help transport kids, feed the bottomless pit that is my boy and give the kids love when I have less than enough energy and just check in periodically to say hello.

I know a couple of my kids have outgrown their T's. And there may be a couple spots on mine. And the hawaiian kids really want hoodies- because it is very cold here in HAWAII! There's even a new style available- a really cute football jersey style!

Since many are not on FB- I wanted to share this with you. No obligation at all.  It's a quick turn since the surgery is fast approaching !

Once again thank you- for the thoughts- prayers- kind offers for help and cards and gifts that have arrived. Each one is so meaningful and appreciated.

https://www.bonfire.com/team-mallory/

Eviction Notice. Feb. 8.

I did kinda check out over the holidays and focus on the kids and the memories. I did the cursory hunting for MRI order. Which entails locating passwords for 3 different sites to try and see if an order is in and the referral. It was not.

Cautious nagging from mom and special friends kept me honest. Especially that special friend who says- I will be there the entire month of February. I know what that means. In addition to my onc, nurses and 2 neurosurgeons- my trusted advisory committee is weighing in on the necessity of this plan and surgery.  So I finally emailed my new neurosurgeon's secretary. The MRI order was at Tripler and can we put a date on the books, she asks. Yeah. lets. The MRI had not been referred out. Can't win for losing or predict. So I call and make the appointment  for a Brain MRI (Thursday)and we settled on a date for Boobie Tumor Eviction. FEBRUARY 8. Notice is given. a month to prepare.

Now that the date is set- the nagging- I have to schedule it feeling is gone and we'e moved on to the lets get this shit show on the road feeling. The I have to get shit in order feeling is overwhelming. The I am too tired to do anything but basics feeling is overwhelming. So each day- a half an hour to organizing something. The way I want it. I also have 8 whole days to get stuff done with Monica and mom when they are here. Because the last thing you want to deal with when you have a brain tumor is the am I legitimately losing my mind or are people messing and moving things feeling.

After so many years of doing this journey and trying to be independent as possible- we have gotten there. Phil is still not so much on board with the asking for help- so please be gentle. He's gonna need it because I need him.

Here's the general idea- in the hopes of keeping it brief and everyone knowing whatever.

The tumor is in my cerebellum. For non brainiac people- this the the fun spot at the base of the head- near the neck that controls things like balance, coordination, and some muscle control. So for surgeon sorts who deal with major cognitive and sensory issues with patients- a patient stumbling around like a drunken pirate isn't the worst outcome. Now- then there's me- who is a bit of a control freak- doesn't so much like the out of control, dizzy feeling and you kinda feel like this is one of THOSE trying times. SO I have faith.

The surgery will take several hours- I will have a super duper high defintion MRI right before so the surgeon knows what is going on and essentially will have a gps map of the tumor region. I will have to sit through the surgical admission center nonsense which usually takes about 3 more hours than it should whilst you listen to every employee of the area stand in the hall complaining about everything from hunger to long hours. There was the famous previous incident where we took advantage of the wifi and sent ICE(customer satisfaction survey) complaints over an over while we waited. That's a lot of complaints in 3 hours. I am so anxious to see the improvements. Not holding breath- will affect pulse ox and ekg and possibly delay surgery....

The doctor will cut into the back of my head- and due to the muscles back there- recovery will have some good pain involved. I'm planning on taking advantage of meds.  The dizziness and balance issues will be a wait to see thing and most have some for a few days to a few weeks. I will probably be in ICU for a night and then spend 3-7 nights in the hospital. I have reinforcements caring for the kids and really want Phil there to help me.

After I get home- between the whole brain surgery thing and massive doses of steroids- I will probably not be a visitable human. I promise to let you know if this ends up being different than expected. I would like to have our home environment be as zen as possible. Ok Ok insert maniacal laughter here. I am working on getting our bedroom cleaned and relaxed and hope to get our lanai updated for a relaxing fresh air space- I have a month right?!?!?. If nothing more- I will get the kids to hose everything down So I don't have to flick the lizard poop off the furniture before I sit.

So what we will need as a family. Please stay tuned. I have a friend who will put together a meal train for us. Many who are going to help with kids' rides to school and activities and give them much needed love during this time. If there is something you would like to do or want to be added to the "call in case of need" list- please message me.  We will have my mom and Monica here for the first round, and several others on call- but my brain surgery friends assure me- 6 months is a realistic time frame to adjust to new normal. Notice I don't say get back to normal. I am very hopeful and plan on exceeding expectations- but brain surgery is not for the weak. I've been on the helping side several times. It is a frustrating beast on lots of levels.  As always- prayers- juju, positive anything are very much welcome and appreciated. Messages, cards- always always loved- for me, phil, the kids. A good friend has become a Lily penpal and it's amazing what a morale boost a piece of mail can be for the littles! Thank you thank you thank you and lets get er done!

New Year, New Challenges, New Opportunities

Sometimes I wonder how I still let time get away from me. Then there are those long hours at night with aches and insomnia that I wonder if I can feel the minutes slipping away. I try to immerse myself in the sounds, the calm, the memories I've collected in this crazy brain of mine. But more so the ones that touch my heart. None of which seem to be affected by the slowly changing glob of cells in my cerebellum.

We wanted more normal and we embrace it. Normal kid silly shenanigans to remind us- none of us are perfect- them as growing humans, us as parents. Parenting is very messy. Life is messy. As we clean up the messes, we get to try an put things in the order we like.

Phil still works long hours. We snuck away one day in December for a lunch date. He spent half of it on the phone with work.  He took a couple days off before Christmas and took over my busy, allowing me to do some of the fun Christmas stuff. He got some general maintenance things done around the house and with the van- finally got to take my Buddha to see the Big Buddha at the Valley of the Temples.

I do love much of the busy-ness of the holidays. The decorations, making cookies and gifts. They are my favorite memories and traditions. They are art therapy.  The girls are even getting old enough they don't want to take the standard goodie bags- so when I put together build your own snowman marshmallow kits- Bella nearly had a meltdown. BUT BOYS WONT LIKE FROZEN. Yes my beautiful child, but everyone loves stuffing huge marshmallows in their mouth.

Kiera had a ballet performance at the new mall. After daily rain for over a month, the weather cooperated-we were worried because of the outdoor stage. She was beautiful.














I went to the girls' school program. Phil couldn't make it because of a new work kinda thing- to be explained later. There were so many parents there. The most I've seen since we've been there (close to 10 years). I couldn't even get inside to see the girls sing- but wrangled a decent view from the door.

Took the kiddos ice skating since they had so much fun at the squadron Christmas party there- got cold and a cold. Bella made a fabulous ugly sweater and helped me with an adventure in making organic coconut sugar scrub.

Kiera and Lily performed songs at Ward Center and we talked dad into some art therapy after. Phillip was spending the day with his girlfriend for her birthday- doing community service. Because that's what she enjoys. I love this. Her family is wonderful, takes good care of Phillip and even helps with our girls.

Christmas itself was fairly quiet. We got to hang with the cousins, played games and started getting the house in order. Some of the BIG news before Christmas in the Mallory house was that Phil was offered a new position in the Hawaii Guard. He will be taking command of the 169th Air Defense Squadron at Wheeler Army Air Field.  2017 brings some exciting new challenges on different levels!  I am extremely proud of Phil, as a friend, as a wife and mother of his pretty cute kids but I have to say the man has a work ethic that is far too rare these days. I just can't express how in awe of him I am. Despite everything we have going on at home- the medical challenges, which aren't just paper cuts or colds and flu, he does his job and then some while still being the best partner through chaos that I could ever ask for. I'm pretty sure over the past 11 years at any given time he's had or been doing 3 jobs at once- not including anything at home.  We are really sad to be leaving our Hawaiian Raptors family who we have been with since 2005. But that is also a good thing about being on an island and in the Guard- We will still get to see each other.

Being in between jobs at the holidays was a balance, but as always we got creative to spend time together. One of those days we spent cleaning out his office in the fighter squadron. I won't lie- it was kind of tough. Even though the building is new, the office was relatively new- I know how hard he has worked and it doesn't show in the trophies on the bookshelf or the framed prints. It showed in the stacks of papers happily shredded- the bits of lunches past steamed cleaned from under the desk, the constant ping of messages and questions still stacking up on his phone.

Yesterday we got to see Phil introduced as the Commander of the 169th. I am truly thankful for the warm welcome we were given during a busy day, that our family had the opportunity to meet many of the men and women of the 169th and see just a small bit of what they do to protect the state and country. I've always said that when the time comes, I don't need public acknowledgement or thanks, I am the lucky one to be his wife and grateful to be by his side for this journey. I hope I tell him enough. It was really difficult to not tear up when he began his talk with, I've never officially had the opportunity to publicly thank my family.  Although we are not ones for pomp and circumstance and have repeatedly said that official recognition is not necessary, sometimes the best way to lead is by example and I have to say after showing and receiving gratitude- it can be a humble way to lead. I know I was humbled by his words- although not unfamiliar to me but knowing they fell on strangers' ears. Yet a short time later, the kids and I got to meet so many of those friends and now they are no longer strangers. As we head in to many unknowns and we continue on with the known of constant change,  there are many good things to come and many opportunities are just challenges we haven't figured out yet.

Tick Tock Tick Tock Could be a bomb, Could be a clock.

Sometimes its easier to play things down. But honestly you don't know what's being played down til after the fact. I don't feel like I play things down, but a few friends say otherwise. I mostly like to talk in circles so only the dedicated ones hang on. Gotta weed out the fluff.

It's the "HOLIDAYS". There are a lot of social events during the "HOLIDAYS".

It's difficult on many levels. Energy wise. It takes planning. Usually I start to fizzle out after about 7:30. It used to be 8:30, then 8. Which on a day to day basis is sort of the time Phil gets home from work.

The social stuff. Absolutely draining. Part of it is the super shallow stupid stuff- like finding something to wear. Since being on steroids I've gained a lot of weight. And steroid weight gain is a fun thing- they call it moon face. Because your face explodes in chubby juiciness in every direction. And the belly roundness. Which is stupid right? I'm here- I'm alive and I feel horrible in my own skin. I don't know whats worse- the 3 year old telling me how fat I am repeatedly or the acquaintance tripping over themselves to tell me how good I look(please still tell me I look good- I appreciate it even if you are lying). I am reminded of my own damn posts about being present and being IN the pictures but when I see the pictures the PTSD sets in- the old familiar- someone is on high dose steroids for long enough- because well there is something wrong. I don't recognize the face looking back.

At my last treatment, surgery was plopped on the table. Now, it has been ON the table for months- I just keep batting it away. I don't want to die from a tumor. But let's face it- that is the trajectory I am on and have been on for YEARS. The treatment could kill me, the treatment could fail me and the result will be the same and really where is the blame? Does blame help?  I also don't want to not be me. I watched my brother not be him. I watched my dad not be him. As my mom gently reminded me- had we caught their tumors early at the non symptomatic stage- we might have had more valuable time with them.  I think of my so many dear friends with loved ones suffering from dementia or Alzheimer's and the years and years of added time with loved ones who bit by bit lose pieces of themselves. It is not an easy road. I don't want my kids to remember that. I don't want to be a burden. Surgery alone presents a burden of scheduling and help needed. This is not something we will be able to do without help.

Tomorrow we meet with the new neurosurgeon. My onc warned me. It's time for surgery. Everyone is in agreement, except me.  As I wrap presents and drive kids to activities and try to go for walks(enjoyment is now limited by plantar fasciitis- heel pain due to aforementioned heinous weight gain) and make dinner and type, I think these are all things that will be put on hold. We will hope for the best. But I've had a series of friends go in for seemingly simple procedures that ended up with huge complications recently. Its a huge reminder of how big this is. I am tired. I've been on treatment for years. My body is not as strong as it was for other surgeries. It's overwhelming and quite frankly I can't think about it without crying and a bit of panic. Because I am just not ready. I am not ready to stop- the slowing down has been so beyond frustrating. I don't want to feel shitty for weeks on end and sleep away precious days. It could be fine. I don't want to rely on friends and family to take care of my kids and do all the things I do. I know there are so many happy to help.  As I make mental notes of all the things I do that will have to be covered, I am alternately impressed and pissed. It's a lot.

If one more person mentions being merely here and alive for my kids is important I might have a throat punch waiting. Coordination or not - pre or post surgery- I will find you. If you have never loved someone who is no longer themselves- due to depression, anxiety, dementia, alzheimers, brain tumors or any condition that requires someone to have full time care- please do not presume to tell me what is important. You get to make your quality of life decisions and I mine. Yes I want to be here with all my heart and being. I want to BE here. I remember laying with Lily so sick, so many unknowns, wishing it were me instead. I wish it worked that way- I would gladly do all this and then some if there were any guarantees to protect them. I wish I could save them from the aches, the realities. So I lead by example I guess- I try and do what's best for us. And as my husband has been told before- yes I realize that we at less than 50% potential are probably still better than some of the blobs out there posing as humans. But we are us because well just cause you can slack doesn't mean you should. I will rise to the challenge. We will make the best decision. It just still sucks. I am feeling the suckiness of it more these days. It isn't easy sharing- but Phil is bearing the brunt of my negativity and that is not healthy for either one of us, as he is my biggest support.

So tomorrow, Thursday it is- decision time. We will meet, we will process, then we will plan. We will call in our reserves. Remember years ago when I said I'd save the asking for help for a time when we will need it. That time is coming. It makes me a bit nauseous actually so I have to go do something else right now. Tick Tock. Could be a bomb, could be a clock.

ROW, ROW, ROW Your Boat

You know it's pretty awesome when your husband meets your friends and is completely awestruck. I have several strong, brilliant ladies in my life who have this effect on my husband.  You know you are in a good relationship when he turns to you and points out one of your friends is probably the coolest person he's ever met and the strongest and I am neither jealous nor offended, I completely agree.

One of these amazing ladies is my friend Row. We met online a few years ago. After some messaging we had a couple Skype dates. She would play Jenga with Bella. How one would ask- who? what? really? Yes, yes they would and it worked. Because things many don't consider- or consider an impossibility become possible when Row is around and it's always an adventure.

A couple years ago, her health was poorly. Things looked very grim. My heart was broken.  You meet people who seem bigger than life and to see their mortality- hits hard. My dad was one of those people. When he died, I quietly resigned that death was a part of life. If he could not beat cancer, no one could. It wasn't a fight. There was no battle. It wasn't about winning. It was about living. And dying. Time was the now. You could embrace both life and death gracefully or you could fight and fight and miss the living to avoid the dying. Yet Row recovered and despite many obstacles, she lives with a force I admire.

When Phil and I travelled to Europe- there were many many countries on our list-  Ireland, Scotland, Pretty much the whole UK, France, Italy, Germany. It was so painful to narrow it down- but we decided we wanted to actually see the places we visit- not run through whacking people with selfie stick go-pros as we see many other tourists do. We wanted to sit in pubs, enjoy the food- look around at the people. Ireland and Scotland were the first to be eliminated because- honestly if we go- I'd dedicate months to visiting just there. Row lives in Scotland. That was one of the toughest parts- I was eliminating a visit with a friend. So what does she do- she caught a train down to visit us when we were in London.  Row has some mobility challenges and uses a wheelchair full time. And she caught a train to London, from Scotland- to have dinner with us. Oh yeah- here's me sheepish. baaaaa.

Maturity is overrated. 

We go to dinner in London and visit the Victoria and Albert museum with Row and a good friend of hers-an equally impressive lady. There is really something to be said for surrounding yourself with good people. It really makes everything better.  It also doesn't hurt to do museums with an art/history major- kind of like our first date- but within minutes it was like we'd been hanging out forever. So when Row said she was going to start planning a trip to Hawaii, I didn't for a second doubt it would happen.

Phil and my mom constantly mention I need to stop making it look easy and Ok when it's not. But here's the thing. When people ask how you are- they want to hear- ok, fine, good. Seriously only really miserable people want to hear you are doing poorly- misery loves company all that jazz- back to the surrounding yourself with good people thing. I don't like to share when I'm miserable and there are a few lucky people who get to be on the inside for it- and I don't think any of them particularly enjoy it. I know Phil doesn't, but well he signed the contract- sickness, health, til death do us part- yada yada. I am a caretaker, so when Row confirmed her travel plans- I immediately went into prep mode because our house is not accessible. At all.  And I know Row wouldn't want me to worry and she would just do- but she is precisely the person who I am happy to do for- not because I think she can't - but because I know she CAN but just want to make something a bit easier or more relaxing for her.

I've seen young adults who survived cancer as kids and so much of it becomes their identity. They become a cancer kid. I've tried to walk the line- because you can't go through cancer or any difficult experience without it becoming part of you- especially when it is a constant shadow- like in our family.  You know and often feel a connection quickly with the people who have had really hard times, they get it. They can relate on a level others don't. Over the past few months- I've pulled away from Facebook. It is a huge part of my "work" and support, but so much of the other stuff gets old. The constant- look what I'm eating, here's the awesome that is my life, my life is really really hard but look how well I'm handling it....posts. And then those who share the really hard days- some days I'd like to have those days at 100 fold and it would be easier than my day. I know that many times I am no better.  I don't like that feeling. I don't like feeling bitter.  A week with Row was what I needed.

Now sometimes you need to wallow in the depth of your situation and sometimes you need to lift yourself out of it. Just about everything that could go wrong on Row's travel plans did. Plane delays, lost wheelchair, earthquakes, broken luggage- no pineapples at the pineapple plantation...yet her laugh is contagious and we carried on. I constantly ask- how- how do you keep so happy and laugh it off? It's a choice. We always have a choice and we can choose to laugh it off or be angry and the result is either laughter or anger- how do you want to live?

Where pineapples SHOULD be....

My inaccessible house- although challenging- was navigated with skill.  I love that my children got to know this incredible lady. Each one of them got to pick a day to take off school to spend with her. Lily and Bella chose the mini island tour- pineapple plantation, waimea falls and Polynesian cultural center. Phillip and Kiera participated in Row's surfing lesson. Yeah- surfing. You heard that right.

George the Monkey and Bob the Policeman. 

Our mini island trip meant packing the car full of stuffed friends. Like George. Why? because Row said it was ok and it's fun. It was. She was right. It was a great memory for us. One of many that day.

It was a struggle for me to not help push Row's wheelchair- I started trying to think of it as an extension of her space and would I grab someone and push them up a hill? my kids maybe... but generally that is her space and it should be treated as such. The number of times she was asked if she could get up and walk was pretty annoying- but again you laugh it off. I realized as she passed many somewhat able bodied people in electric wheelchair scooters that there is a reason they ask if she could stand. Americans are an interesting breed.  As we neared the end of the day- we ventured to do the Boat ride at the PCC. It was an experience and it worked out. And that is how it goes- sometimes things work out- boat rides, and sometimes they don't -no pineapples at the pineapple plantation(seriously).

Phil, Phillip and Kiera took the day off to go to the beach with us. After 11 years here- I have never surfed, don't care to surf, please Phil stop asking me if I want to surf. Yet for all those who want to try- he's willing to grab the boards and give you a steady push into a wave and help you do your thing. I have to say- watching them teach Row the basics of surfing was alternately terrifying and amazing. As it has been watching each of the kids learn. I wouldn't expect any less. And in the end it worked out fabulously- the smiles and experience and no I still don't want to surf, but so glad I could share the experience with a good friend. The laughter at dinner, playing board games, making pancakes. The whirlwind of big experiences conjoined with the day to day.

There are things and events in life that change you. Many are out of our control. We can control the way we react. I am a very reactive person. Emotional, passionate. Phil learned years ago to give me a buffer time to react and cool down before trying to have a rational conversation. We are a good balance. Row laughs it off. A lot. Which meant we laughed it off. Why? because you can choose to be angry and spread anger or you roll with the punches and row through the rough waters. Or try surfing them. It's your choice. Laughter seems like a good one. Now where the hell did I put my funny bone?

It's Upside Down: Problems, Politics, and Pineapples

I'm gonna try a quick update...

Jen: When trying to schedule my MRI- which was referred out to a local hospital(super convenient for actual scan-nice facility-easy scheduling) I had difficulty getting a hold of my neurosurgeon.  After calling in my onc and nurses to help - we decided getting the MRI was more important than where at this point and the radiology dept was NOT budging with letting my lowly dependent self into their fray. Since we are monitoring(HOPEFULLY) just millimeter growth- it is important to have as as much continuity as possible. It's never going to be a perfect science- we do the best we can.

I had the MRI the day before Halloween- after an hour of trying to find my veins(one of the downsides too - but I'm used to it- I give them a couple chances- just don't want them blowing through my few good veins left. I have my MRi and the tech assures me the transmission of films and report will be seamless- they have new software and it is almost automatic. Famous. Last. Words.

Now waiting for results kinda sucks. You just don't know- it can go either way. I figure I'd wait until the next chemo day and just hunt down the report then. But I did need to follow up with the neurosurgeon. SO I call to make the appointment. And well he's gone. Like took a job, left the island and is no longer working at Tripler.  Yep. No notice, no- you will be meeting with a new neurosurgeon. Nothing. I don't know what people who haven't been in the system for decades do. Or less than bright people. Or people in general. I am about to lose my mind. Part of me is super pleased that I am so invisible on the worry scene that no one bothered to call me. The other part of me is terrified that this lack of decent care does not make me feel good about any of it.

So chemo Monday- scans are in the system but no report. Standard. We've played this game before. So I let my nurse know the extra fun tidbit that the neurosurgeon left- she prides herself on being in the know- she darted out the door like nobody's business- she did not know. She still couldn't find my report- but by evening my onc called and assured me he had- the unofficial report until the new neurosurgeon weighs in is stable to slight growth, we stay the course for now. Which is flipping outstanding because if we had growth and needed to act quickly- I am not in a good trusting place right now.

Phil: Works too much. Does an awesome job there and at home and I really wish there was something I could do to fill his tank- because tanks people- gotta fill that tank. But he is an amazing dad and listens to me gripe and still gets it done. I am so grateful I chose him. I am so sorry its not easier. But dear God I'll take the shit with him by my side than the pretty without him.

Phillip: Major senioritis. Has stepped down from wrestling after the concussion. I don't mess with brains in our family, but the decision was his. We are looking at colleges and trying to plan and coping with the frustration that is all the unknowns we have in front of us. He is composing piano songs still,playing beautifully yet doesn't really want to pursue music educationally- has a really sweet girlfriend and we are navigating some of the big issues that come with being a 17 year old senior and not sure what the future holds or what we want to do.

Kiera: The ballerina. Rehearsals for a nutcracker performance have kind of taken over. Which is good- she loves it and although comes home sore from being on pointe- is dancing beautifully. She also manages straight A's and is already looking forward to next years classes.  Her major form of procrastination is cleaning- which is very much appreciated. She has her driver's permit and well my nerves appreciate we have until April to log all the hours.

Lily: Oh sweet Lily. Lily decided to run for student council president. She brought me her speech. Lots of good- albeit very lofty goals. Like bringing back winter carnival. So I looked at her other ideas- stopping bullying, more afterschool activities, and fun recycling drives and projects around the school. Oh she is practical. We discussed only offering projects she was really willing to do everything she could to deliver.  Since the current principal did away with winter carnival and wouldn't even let her do an educational project for fun- did she think that she could realistically get winter carnival back? No. Ok- So if you go into it promising something you don't think you can get- is that honest? No. Now if you truly want to spend your time fighting for it- you should do it- whether or not you have opposition. Or you could choose other goals and focus energy on accomplishing them. Oh dear god welcome to politics and life. Yuck.

So Lily gives her speech in front of the older classes who vote. She came home and felt it went well but that one of the other candidates promised ice cream on Fridays and interisland field trips. wow. just wow.  He also swears on the playground and only is doing student council because otherwise his parents would make him play a sport.  Oh Lily. I know it's hard. Doesn't this sound kind of familiar. This happens in politics. Promises are made to get more votes. By people who do not intend to follow through- or they don't understand the work required to follow through and don't have the resources once they get there. What's the worst that can happen? I lose. Nah- The worst that can happen is that you get discouraged and stop doing good. You can lose and still be in student council and still make great changes in the school. And you don't have the pressure of being the one in charge- which isn't always what it's cracked up to be. You do not have to be the President to be a leader. Always remember that. SO of course she did not win. 6th graders were drawing parallels to her being Hillary and the other kid being Trump. All in all she handled it gracefully. We had lots of talks about how she can still do the things she wants to and the new President might not be ready for the tasks ahead and by helping because it's good for  the school is the right thing to do.

Bella; Bella fell down the stairs again. And off the ripstick and skateboard and kicked her cleat off multiple times punting or kicking the soccer ball- in GAMES. That is Bella. She's either getting ready to hibernate or for one really big growth spurt. Still trying to get her to use her smarts for good. Very glad soccer is over- the experiment in being team mom taught me a lot about humanity and what nonsense I have energy for. She just wants to play. We will figure it out.

We are really really looking forward to a dear friend from Scotland who is coming this week. I can't wait to spend a week with her - although I do worry about being able to keep up she is a force to be reckoned with! Stay tuned for pictures!

And as our annual tradition- We remembered my brother Bob with a fancy pineapple upside down bundt cake.  Every year its a new challenge to try and figure out how to maximize the number of cherries for the kids. At some point we will make the entire top cherries.

This year was particularly rough emotionally, I don't know if it's just the tireds, or all the negative swirling around, but I miss him. It's heavy and hard. There are so many people with so much hate- we need the balance of good. Phillip and Kiera are to the point where they goof off together and are no longer pretending they don't know each other at school. I see them covering for each other and looking out for each other and it makes my heart feel better. But Phillip's headaches and concussion really weigh on me. The what if's. One of the things that puts my mind at ease is knowing that just in July we had scans and everything in that teen brain was fine as of July. Just another day of parenting LFS.

Filling the Tank.

A friend just posted that you know it's true love when you open your computer and your husband has cleaned the screen. Yes.

I have flowers sitting on our table. Phil is not the most romantic man in the world- but he also married a practical woman who spent the first 8 years of marriage convincing him jewelry and flowers were not something he needed to buy me. I would let him know when I wanted something. The other training- do not buy me flowers- specifically roses-on Valentine's Day or Mother's Day. It's not a practical expenditure. Sure I appreciate the gesture- but Roses at a discounted price at another time are even more beautiful. I also would tell him- in my family- my exposure to flowers was at funerals. The smell of flowers reminds me of funerals.  When Safeway opened down the street and this latest haul of cancering began- he started bringing home flowers every time he would stop in for the odd item we needed- like dinner.  I would joke it was because I wouldn't be able to smell the roses at my funeral. But he would say- someday they won't remind you of funerals. We now have peeps at the floral department. Very useful for girls' performances and prom corsage needs. And every time he brings me flowers- I appreciate how they now remind me of this new normal in a tough time, bright splashes of color that no longer remind me of funerals, they remind me of a really good guy who loves me.

Busy. That is the word I seem to just say over and over. How are you? Busy. How are the kids? Busy. How's Phil? Busy.

It's true and doesn't elicit the sad response to what really is going on in our lives. I don't lie. My filter is hopelessly broken- so really don't ask me about something unless you want to know what I think. I am exhausted emotionally and social events are draining a lot of times because I have to be cautious about letting my non filtered mouth run- because although I can say what I think at all times- it is not always necessary or prudent or helpful. or kind.

Weekends of "catching up" are a distant memory. If Phil is "off" for a weekend- it's a combination of exhaution and trying to triage what absolutely needs to be done and work phone calls. Adulting sucks.   I have gotten to the point I feel horrible that after a drill weekend of working, he has to come into chemo with me. It makes me sad.  Sure it's making the best of the situation and we get to spend hours together. And I cannot dwell on wishing the situation were better because that doesn't help, but at some point it is really tiring to always make something less than ideal into something better. But then again- isn't that our point here on earth. To leave things better than when we got here. So I continuously remind myself there are so many who have it worse than us and make the absolute best out of it. And hope those who are #blessed realize it because at times like these- the white noise of normal how lucky am I to have nothing going on and spend all day frolicking and enjoying life to the fullest- stings. When others want to have social events or need to get together to fulfill their facebook posts of how busy life is- while tasking others to make it happen- kinda makes me loopy.  I know it's a me issue. I am perfectly capable of saying no. Especially since I was taught to be independent and take care of me- I cannot rely on the fairy tale someone to swoop in and save me. If I want something done- I have to do it- if you ask for help- you can offer guidance but you accept the way it is done ----or do it yourself.  I like to circumvent the headache and just do it. Part of the problem is we let our tanks get empty.

When I was learning to drive, My dad used to say- never let the tank get below half. That way you just don't have to worry about running out of gas. We were Honda people- and Honda's are known for their wonky gas gauges. Mostly I think teens suck at proactively doing things like filling up tanks and he was using a novel approach...There's a gas station on every corner- no reason to end up on empty. Now he drove extensively for work and many times I got to travel with him and the lesson was even more important as you watched the road signs telling you how far to the next fill up.

We've let our tanks get empty. Phil is tired. I am tired. The kids are tired. We are busy. Busy living. Busy working. Busy being. Because cancer is looming and there is the constant threat of- one day we will not be able to do and for right now we CAN. But it is also like going on a week long party in Vegas- at some point you need to crash. Do you just go until you crash? Because when you are stuck not feeling well- you spend a lot of time missing normal.  And we have been really lucky to have a good spell of Mallory busy "normal". Which I think by any other definition is called chaos. So at what point do you say ok big ass cancer shadow- lay off so we can get on with getting on. Or you do it despite the shadow. And spread your own light.

I drive and I drive and I drive. To and from appointments,  school, to and from ballet, to and from soccer, voice lessons, Costco, driving practice with the teens. Always routing and planning to be efficient- for sanity's sake, for gas's sake. And I always keep an eye on the gas gauge- because Hondas are a little bad about their less than gradual decline and tend to bounce all over.  And so many days I think ok- today when I'm by the shoppette or costco- it's time to fill up.  I will get in the car and the tank is full. I smile and darn near cry because that is one less thing to do. It truly is the little things that add up. Maybe my full gas tank won't profoundly effect the world- but it changes the trajection of that trip.  It reminds me that there is a wonderful person looking out for me and doing what he can to make my life easier. And in that few extra minutes- maybe I can stop and smell the roses and put a little extra in my tank.

And the Trophy goes to: Impossible Toxic People

You can pick your friends. You can choose your community and who you surround yourself with.

Sometimes you are stuck with a bad bunch. Like with soccer. and AYSO.

Leeward AYSO is hopelessly disorganized and just a hot mess. I can't fix everything. I can't fix it. My kid wants to play soccer. It's an option. If you are completely flexible, like last minute notice, and put up with favoritism and sexism.

This diatribe could go on forever, but this is my vent on bad people to purge it and then I am moving on. By the way I'm tired so there will be swearing and referring to oneself in third person.

Our kids are always on the Bad News Bears teams because we sign up late and generally don't "know" people. People pick teams and coaches and such- my kids just want to play- location is more important when trying to coordinate the afternoon shuffles.

This season, Bella's soccer team is half from Waianae, half Kapolei- as opposed to one team being dissolved. Because when the powers that be have to load their select teams- it leaves all these leftover kids like Bella who just want to play. SO our coach doesn't even have a kid on our team- but kindly volunteered- because none of us other parents can be bothered to coach. She is a good person. She knows the sport and is a good balance of tough and fun with girls.  AYSO is a volunteer organization, parents are expected to help. Its in their whatevery-doodle thing.

First day of practice- we all stand around- that uncomfortable -are you on my team- thing. I see a mom yank her kid to the ground by the ponytail. Yep it's gonna be THAT kind of team.

Coach asks for help with anything, volunteers, nothing. nothing. Noone. Now it's U12- the girls should be pretty self sufficient. The biggest thing is reffing. NO ONE wants to ref. Its always a problem. ALWAYS. I say give parents the option- fucking ref or fork over whatever $$ to have someone else do it. but I don't have time to fix this bullshit, so technically I can just do what I've been brought up to do- offer what I can and go from there. I don't want to ref either- Phil will probably only be able to make a couple of games due to his fun schedule- Kiera has all day ballet on saturdays and the boy has ACTS/Sat's and wrestling- so I cant pay them to do it this season like I have in the past.

I talk to coach later and explain our situation, cancer and all.  I'm happy to send out emails, disseminate schedule- help order trophies but I do not have the energy to ref and most practices I will be running kids from point a to b to c in a carefully choreographed volunteer uber drill so I will not be just sitting by the sideline. A modified "team mom" if you will. She just lost a sister to breast cancer. She doesn't want to put that on me. Honestly though- we've both assessed the team- there is not going to be any other offers. She said give her a week. A week later- guess who's team mom?

The schedule doesn't come out until the 4th game of the season. I'm straight forward- meet with team- I don't think snacks need to be a huge deal- I don't believe in potluck after games but I will do what the team wants.  Crickets. Crickets. I don't know if you don't tell me. One Mom pipes up- on other teams the schedule just comes out and if people need to switch days they do. Ok great- but if you all know you have conflicts or preferred days- I can do that from the start. Crickets. crickets. (I've found in these situations when people are left to their own devices- they fail or skip out or generally just suck.)  If anyone has a preference let me know- otherwise I'll assign.  And this is that kind of team.

So no volunteers. No input. No response to emails, text or even show up for meeting(or to pick up their damn kid) after practice. So I put names in hat and generate schedules. I take the first 2 games of snacks because well I don't generally expect anyone to do something I'm not willing to do and Bella honestly likes to take snacks for her team.  A couple moms see I am doing that and volunteer the next slots. I offer to bring the pop up tent for girls, just ask that I please have help setting it up.  After no help for 2 games-( I have the boy and girl children help because I needed it-ending up with pulled muscles and mystery bruises- love chemo weeks) I didn't bring the tent. oooh no tent today?? nope no tent- too tired to mess with it.  Next time- another family brings one. Ok appreciate it.  Not entirely hopeless.

So then comes the game with the first assigned snack slot. Mind you I send out emails, the team page sends out reminders, everyone has been given a physical copy. AND a bonus text the night before. This is all shit I've done with my spare time- well because I love my damn kid and other parents are being kind enough to coach her- the least I can effing do is help them a little and the request was to send out reminders for them. I get a text message 10 minutes before the game is supposed to start. Remember ponytail yanker?

maybe maybe not. who knows.

No follow up- no show. At half time- we have 2 parents helping coach because both other coaches are off island.-Something AYSO was fully aware of but refuse to help with scheduling- I'm sure to accomodate "select" coach druthers.  I am at the tent with the girls because as usual- our bad news bears are playing a select(advanced team) and playing their hearts out in a very unmatched skill kinda way and this is when kids get hurt. So I was checking on girl who had been hurt. No snacks- who has snack- of course- no show mom has snacks. No surprise there. Sorry girls no snacks today. It's an hour long game- they will survive. But the ranks are pissed. And apparently one of the team members mentioned this to no show snack girl at school the next week. OH yay soccer mom drama ensued. How the fuck do I get myself into this shit.

Coach told daughter that the next week snacks were already assigned and not to worry about it- the past was the past and everyone was moving on time to practice..  woo how unnecessary. but- oh we were sick now? that explains the lack of follow up message...riiiiight...excuses excuses. whatevs.

So I forward coach the deets and she has a face to face with said no show snack mom who has a big bite by text but ain't so tough in person. Awesome. I'm all about knowing people are fighting battles you know nothing about- trying to be gracious an understanding but we kinda have a couple strikes here. Following week- I email/ text to please order and pay for trophies if they are wanted by such and such date. One mom says flat out no- 2 others don't respond. No show snack mom is one who doesn't respond. You know how this is going to go down.

Jen orders trophies. Jen orders coaches gifts. Jen is covering coaches gift because I don't want the effing headache and I'd give coaches gifts anyways- they are kind enough to dedicate 6 hours a week to helping my kids- I appreciate the hell out of that. Trophies are cheaper than anticipated- because Jen has been in game system for years and knows a good lil shop by physical therapy. Not the more expensive- we got a guy-"AYSO" connection. I let parents know the cost- that I was covering the coaches gift and I will bring their change to next game. Good parents say keep change and apply towards coaches gift. No show snack mom says- is it too late to pay for a trophy? Jen says well I already ordered the trophies, I can call and see if a trophy can be added and yes you can pay me. Because I think kids shouldn't have to pay for their parents being assholes. And then Jen kicks Jen's self for not just ordering the damn trophy to begin with because Jen knew this was going to go down like this. This is why Jen is not in sales. She would never make money. Jen is beginning to think she doesn't really like people at all.

Jen orders the extra trophies- even for others who don't want because well we can't not give 2 girls trophies. Fucking everyone gets a goddamn trophy. whatever - I just want to be done- this is why my kids don't have college funds but decent manners.

Then Jen sends out reminders for this week's game and snack and reffing assignments. Of course no show snack mom has reffing assignment. There were already auto email reminders with all pertinent info. We know how this is going to go down don't we? and there it goes.

winner winner chicken dinner. I did explain everyone has other kids and we are all busy. Apparently that was rude. I cant even reason with this idiocy. nonsense. lack of decency. with no clue. 

So I stop bothering because you cannot reason with this type of person and I refuse to let her toxic nonsense ruin my day- despite the fact it is really trying to because well it absolutely fucking offends the shit out of my sensibilities- but she will never understand what an ass she is and I do have better things to do with my time. Imma gonna let karma deal. I respond for her to please bring the trophy money to the game on Saturday. We all KNOW she wont be at the game on Saturday. Then I change my mind and text - never mind the money- I'd like the trophy to be my gift to her daughter.  Then I block her number because of this last gem. We all know I'm a neva gonna see that $14.  Its not even worth it and lord knows that little girl needs some kindness in her life.

And that is a day in the life of soccer mom. Check team mom off bucket list. or whatever hellish list it belongs on and good riddance. So Phil will ref on saturday because we are not assholes.  I am done with AYSO and will have to get creative for Bella's soccer.  And I will point out that this is fairly noramlish life stuff. There are assholes everywhere- everyone has one- it's a personal choice to BE one or be around one and I am pretty mad at myself for letting this one stink up any bit of my world.  And really no one wants to be up close and personal with one. This nut job is a front runner for 2020 presidential elections right here. 

Awareness, Advocacy and Exhaustion

Pink,  Pink, Pink. Kids wear pink to school, football teams and brands sell all kinds of pink nonsense - very little of which goes to help ladies like me. Some ladies love the pink, buy the pink and stand midfield and get a cheer- so for that sort morale for these survivors and fighters, that is a good outcome. Pink bracelets that cost $25 and $1 goes toward something vaguely breast related.


Awareness is important- and paramount importance on an individual level. As the president of an organization whose mission is supporting those with a rare hereditary cancer syndrome called Li-Fraumeni Syndrome(see- so I said the syndrome name there- put it out there so maybe one person will read it and go- hmm how the eff do you say that..)- awareness is something that is both part of my job and that I personally invest an inordinate amount of time in.

With LFS, our risk of cancer is close to 100% in our lifetime. Lifetime is 60-70 years too by the way. It's 50% by age 30.  In my family- dead zone was 43. Of course my aunt and uncle are nice enough to survive into their 60's which gives me hope. Then sometimes I sit and ponder that we lost my brother at 16 and my cousin at 8 so years lost to the damn disease pretty disproportionate there. If you look at it in years lost.  Quality life years. Kids, taken by the nasty disease.  So with awareness, it's getting better with detection for our kids(I am putting it in understandable terms- "better" is on the scale of shit soup to shit sammich- at least with a shit sammich you can try and grab it without it getting all over you emphasis on try.) Early detection "buys" us time. Time with cancer- but time. Someday we will be better and nail this prevention thing.

Before I knew for sure I had LFS- which was officially accomplished through a kid having cancer and a mailed off blood sample genetic test in 2009. I knew I had LFS in my family. We had a shit ton of cancer. So I went to my annual physical exams, I had weirdsies looked at- spent many a night wondering if lumps were going to kill me, or if the headaches were tumors. When I was 16, I drove myself to an MRI situated in the parking lot of the Aurora Hospital because my brother was dying of a brain tumor and I had headaches ALL the time. Go figure. Taking all advanced courses, brother dying, one of the toughest times socially- but at least we ruled out brain tumors as a cause. One would say- what are the odds of a family having 2 cancers at the same time- much less 2 brain tumors- well you've never known a mutant family because it is horrifying how much it happens. Hell for 3 weeks of my first pregnancy - before I knew I was pregnant I was convinced I was dying of cancer. That is livine LFS, living with hereditary cancer. The first thought- it's cancer. Oh no I might just be preggo. Well shit that's not a big deal...That's a temporary normal condition. Years later, that child started having symptoms. Oh hell the kid is wasting away- shit what if it's cancer- oh it's just diabetes- at least that can be treated....

So while many put on their pink shirts and race their pink races- good changes have been made in the world of pink and breast cancer. Which is awesome. But you can live without boobs. You can. It's not fun, especially if you are a young woman. I of course was fortunate to use the hell out of my boobs before chopping one off- so I have a different perspective. I completely feel for young women who get shackled with this bullshit. Like kids getting cancer- there is something very wrong with young women getting breast cancer- genetics or not.  In LFS- we see women in their early 20's with breast cancer. Some have a family history of breast cancer- others are the very first in their family. So awareness is making a difference in that women are aware of their bodies and being good about screening- we mutants have to be extra dilligent- BUT what about the mutants out there who don't know they are mutants?.....awareness. See the conundrum. Because LFS is going to effect way less than breast cancer and it effects WAY more body parts than just the breasts- parts you cannot remove easily- BUT breast cancer is a HUGE part of LFS. Also a p53 mutation- which we (mutant sorts)have in all of our cells and is why our bodies don't fight cancer as well as it should  "Normal" non mutant cancers(just the toomahs)  have mutations in their cells too- and 50% are p53- driving their cancerness. SO being aware of p53 mutations has a much bigger impact on the overall cancer world than just my merry band of mutants- digest....

I teach my kids to be aware of their bodies. Lumps, bumps, headaches, anything weird that is changing or not changing but weird or just seems off. ALL of our cancers were diagnosed because I had that feeling. The pediatrician thought precocious puberty for a 3 year old was reasonable with Lily's adrenal tumor.  Neither one of our sarcomas were taken seriously. I only had a local anesthetic when mine was removed- 2 flipping students in the room and me repeatedly saying please take wider margins. But you will have a scar. Rather a scar and arm and living.  And then trying to get a breast MRI as a dependent in a military hospital even though you have a documented high risk and feel a lump. Well when you get diagnosed with a sarcoma in your arm suddenly BOTH MRI machines are available to you. We've followed several things in multiple children. The stress and what ifs suck. Fortunately most are just normal weirdish things that if we were normal hahahahaha we wouldn't be bothered with. But we have to be bothered because if we let the one get away- that is the difference between life and death for us.

Which brings me to advocacy. Having a cancer syndrome that's rare that no one knows about means CONSTANT advocacy. 1) can you spell that? Li what? 2) I've never heard of that   or We studied that in med school do you mind if I bring in all the residents to talk with you?  to 3) which I have never heard but many of my mutants have- that isn't a thing. Yes, yes it is. First of all we are sensitive to radiation. Meaning- just Xrays and CTs can cause damage in our already mutant tissues. So mammograms for early detection aren't the greatest option all the time- the more ways we damage our cells- the greater chances of tumors developing. Hence the breast MRI. We cannot avoid radiation- it's all around us. We do the best we can. I opt of the full body massage at TSA. We dont get dental xrays- because last time I checked those rays go directly to your nugget and unless the person operating the machine has a better understanding of it than I do- not gonna happen.  Advocacy. Doing what's right for you. It takes thought and effort. It is exhausting and it matters.

When you have LFS there are different considerations. We call it shark closest to the boat.  You have to deal with the immediate threat. SO alot of times you have to really do something you don't want to do to even get to the point you can consider the down the road consequences. There is no clear cut answer and the choices just fucking suck. Triage. So picking between 2 politicians- although not a great choice and disappointing is not a life and death crisis for me.  Shit sammich, shit soup- pick your poison, let everyone else pick theirs. Shut up about it and live with the consequences. Either way it's gonna be shit you have to get down. If you don't like it- DO something- just bitching is NOT going to change anything - unless you bitch to the right people and then we call it advocacy- figure out the right people- FB is NOT it.

My current shit sammich- the fucking Brain MRI. Which was supposed to be the first week of October. IS. NOT.YET.SCHEDULED.  While at one of my many adventures to Tripler in September, while Phil was in Guam, I ventured down to MRI to schedule in person. Because calling to schedule them is like an olympic level game of phone tag.  And they know us-- so generally they have a little pity on me and TRY to schedule appointments.  We are lucky to live by a military treatment facility(MTF). We have access to much better care and less headaches from being referred out. When we get referred out there are bills and insurance claims and none of that ever goes smoothly and is a time committment. So I prefer the limited bells and whistles of the MTF- brought about by soooo many complaints of wasted tax dollars...but they are your tax dollars too so well thank you and I cant complain.  I love the looks of horror when my civilian friends  and family accompany me to the hospital. Helloooo 1960, BUT I am alive and here so #1 objective is a success. Dang I digress.

So the Radiology dept is down a machine. They are always down a machine. There is too much business there for what they even have normally. And different machines do different things and well MRIs take longer than CTs, xrays yada yada. So dependents get referred out. Unless its a stat or urgent which unless I say I am having symptoms- doesnt make me. Yes, Brain tumor in fucking dependent head takes back seat to active duty owie muscles. And although there are times I am not opposed to playing up symptoms to get expeditious service(ER hell)  I will not do it for something that will land me in the OR or when its not in our best interest. So the nice lady who scheduled all my kids' MRIs explained  to me that I was referred out. Did I not get notified by mail? Haha. awesome. no.  Which was fascinating because My onc and neurologist both discussed this with the radiologist and for continuity of brain toomah care....I should be seen there. BUT I never GOT the referral. In the mail. She is appalled. Nothing she can do- radiologist says no-tries calling neuro- he's in surgery- kinda more important and someplace I dont want to be so I will figure it out. I call neuros assistant who we all know is the go to person- explain the issue. She will call back. She does not call back.

Then life hits like a mother fucking(excuse the language but highly appropriate here) truck. Refer to September hell. Normalish hell on the homefront with added chaser of super hell- but on top of me trying to advocate to see what the fuck my brain tumor is doing so I can maybe plan brain surgery around my husband's ever so amenable schedule(insert biggest effing sarcastic font available) and the lives and times of 4 kids and their medical and life. Then we are all completely emotionally drained and throat punched again with how life changes in an instant(well aware- these fucking MRIs also hold a slice of that intellectual power...scanxiety much). I am emotionally drained. Phil is emotionally drained and although rationally I know I need to get my shark teeth up in the MRI scheduling and make it happen- there reserves are gone. Depleted. Moving expeditiously toward negative.

Advocacy. Time. Energy. Resources. All in limited supply right now. I hunt down my online password. To see if there is in fact a referral that I never got in the mail. There is. I call neuro assistant who is now on leave for a week. So at that point I triage and am going to punt it to my onc who I will see at chemo the following Monday. So onc and nurse go all MRI wrangler for me and have the exact same result I had. So we are back to shark-get MRI done asap -which will have to be referred out- which not as ideal for comparison as in house and risk repeating or wait 6 more weeks to be seen in house(and probbaly get bumped...) So Phil and I ever trying to plan our schedule(futile efforts)  say let's schedule the 6 week appt now and we will schedule the outside one. They won't until we have the outside one done..I cant even. So the next day I call to schedule. The outside hospital never got the referral either - I have not heard back. And there we are.

So Tomorrow I will again advocate to get something done that is imperative to my care- that I don't want to do. Because regardless of how much stress this scan causes me- the result is not going to change. Me not having it doesn't make anything go away. Now I might have to deal with bills and such and hunting down results and we will compare them and say we need more information and rinse and repeat. Is it the hardest thing in the world? Nah. Comparatively to what we have to do and have done and have been through- it is teeny tiny beans. But it is one more thing on the cumulative stack of things. And one more thing that adds stress to my world and takes precious time away from anything that resembles down or "free" time.  And I've noticed my compassion reserves are depleting and that is very very hard for me. Because when things get bleak for me- I throw myself into helping others- because there is always someone who could use help. Between my energy and the emotional drain, I've had to pull back and then the depression monster sets in and he carries all the loss and pain of the past in this big ominous cloud balloon.  And it's lonely. And hard. And I hate that I have so many friends going through extremely tough things and I am limited to help physically or emotionally. And I get a little negative and angry and I don't like to share that - as real as I fucking am- there is enough negativity out there. So that is the quiet. Not me hiding anything except monsters of negativity and sometimes that takes a lot of effort. It's exhausting. Wish some others would be so kind.

In other news- our oven finally arrived- evenly cooks bacon and cookies without the added fire hazard risk and I have an operational washer and dryer.

Impossible Loss.

September was impossibly hard.

Phil left for a TDY the day after Labor Day- and of course we were grateful- usually they leave the weekend before. Glad to have an extra day to get some things done.

On the 6th, I dropped him at work and went right into chemo. It was my first solo chemo mission I'm proud to say. I have so many tough mets sisters who do this drill by themselves week in and week out and I know how lucky I am to have Phil truly want to be there with me. It was absolutely heartbreaking Monday night as we were cleaning up after dinner when Phil asked what my plan was after I dropped him off. Work has  been beyond busy for him, although that is not new, it's life, but I really try not to add to his lists. After all he spent his weekend trying to make sure all the possible breaks around the house were in working order because Murphy tends to be an ass with his laws. He is amazing. Phil not Murphy. Murphy can bite me- and has, over and over.  So the look of realization on his face, Phil's not Murphy's- because Murphy again don't give a rose rodent rectum... that he had forgotten chemo absolutely broke my heart.

Chemo was uneventful and our first week went off without a hitch. Insert maniacal sarcasm face, laugh, whatever here. It was a normal disaster. 2 sick kids. Me trying to be 3-4 places at once. Each day saying I'm going to take it easy and well yeah- let's not say that, ever. Me getting sick- debating if I should have the boy child drive me in to the ER in the middle of the night- eh nah- my couch was more comfy than the ER.

So in the next weeks, I recovered, still had sick kids, 504 meetings for Lily- hearing aid loss and replacement, trying to get incompetent public health nurses to find and file paperwork so my child can have emergency meds at school(every damn year),  my car battery died, at the soccer field. Again In laws to the rescue. The dryer quit. Excellent lessons for kids in outside laundry drying- Lucky we live Hawaii, The oven we ordered did not show up and actually may not exist- TBD. I fortunately got to see my cousin and a truly awesome mutant- it did my soul good. Lily got sick again. Bella decided puking was a fun nighttime activity.  Phillip got a concussion. My MRI orders are messed up and I cannot seem to fix it. I know there is more but it suddenly all became really really really unimportant.

Late on Phillip's birthday, I get a call. The time and number are those that make a military wife's heart stop. You don't answer it because you know in your heart it's not good and I know I got a text earlier from Phil, but when. So I take a deep breath and call back. The first question is always- Have you talked to Phil? I had not. He's Ok. And you breathe but you know something very very bad is coming and you know that there are not 2 uniformed men at your door but you know that someone you care about very much is not going to be so lucky tonight. And your heart breaks so swiftly and completely because after almost 20 years you can never ever- as much as you know the risks of the job and try to prepare yourself- you can never ever prepare yourself to lose one of the guys. Sudden loss is so unbearably hard and unimaginable and knowing tonight there is so much heartbreak that you can do absolutely nothing about is excruciating.

There was an accident. It did not involve the jets. But really when it comes down to it- that doesn't matter- what matters is we lost a great person. Jeffrey "Bull" Braden. A young pilot with a beautiful wife and daughter and a baby on the way. A son was lost, a friend. And no one will be the same. As soon as I hang up, I crumble. I haven't been active in the squadron because I can barely keep up with our necessities. But it doesn't matter. It is family. And now- even more than usual,times like these I hate that I can not do it all. This is why there is a tight knit community. I'm just the weird distant relative who is always sick now. I call my sister in law and she comes over. I am so grateful for her. I know that Phil will not have time or be able to call and she assures me its going to be ok. All I want is to hear his voice and I know how absolutely devastated he and all the guys are. And then I feel completely devastated because a young woman will never get to hear her husband's voice again. A little girl will not get to see her daddy. A baby will come into this world without him. It is so unfair.

I kind of want the throat punches of perspective to stop. WE GET IT.  Phil returned home Sunday.  I so wish there was anything I could do. He drops me at chemo Monday and I can not wrap my head around the impossible 3 weeks it has been and that it just does not get easier and we are physically and emotionally drained and yet grateful just to be. He heads into work. Despite the impossibly hard. We hug each other tighter, again. We do what needs to get done, still. And we hope in some little way to be able to help others just a little bit.

If you can, Please please Keep Jeffrey "Bull" Braden's family in your thoughts and prayers. Please keep the Hawaiian Raptor Ohana in your thoughts as we prepare to say goodbye to a friend and outstanding pilot.

Jeffrey "Bull" Braden Memorial Fund

Bull Braden Memorial FUND