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

The Breaks

Things break. Hearts, waves, garage doors, bones. You catch a break. A good friend, someone helps, a wave. Break throughs. Breaking even. Taking a break.

A week ago the girls had their voice recital. It was on the tail end of a long(fairly normalish busy) kind of week. The recital was very casual(which I LOVE) and both teens had "friends" that were there with and for them. Which is another stage I am grateful to be here and alternately dreading- break ups.

Phillip had a break up not so long ago and it was not as traumatic as some of mine. With my husband even, long stories. Shocking to hear we've had a long history of bumpy roads- hence the really good shocks and struts we had installed or took time to put into our relationship. Part of life is learning about people and relationships and how to work with them. And many times the hardest part of being in a relationship is realizing the person you are with is not the person you want them to be and it's not up to you to change that- it's up to you to decide if you can live with who they are and accept it or move on. Sometimes you find out the person someone is- is actually better for you than what you thought you needed. Or you make the break, because clearly they are not. Learning curve.

As with all things drama, theatre, performance- there are breaks. You say Break a leg- not good luck. There is little that is fair about the entertainment world. It is rehearsed and really it is about who you know or someone helping you along the way-the breaks. The big break. I'm not saying there is not a lot of hard work and you can't break into the scene yourself. Totally doable. But most of it is luck and someone else's druthers. I'm a behind the scenes girl. The idea of being on stage doing anything other than painting it or arranging props makes me nauseous. But to see the girls enjoy it and shine- well that I can do- watch them shine. And they did. And they were the most shiney when they had fun and it showed. That and when they tried to make me cry- which was their voice coach's doing- Seriously- For Good from Wicked, Phantom, Think of Me- jam packed public tear fest. It was sloppy- my crying not the singing. And I love them and their coach to death for it. He is so good with them- pushing them to do better, yet lifting them up when they need it. He asked me to trust him and I had doubts, yet I did and the improvement I've seen in both girls (and many of their friends- also so fun to see!)over the year is really impressive. And I know they all worked hard. Despite Lily losing her hearing aids the week before recital(another indication of good training- she had to rely on what she knew- not necessarily what her ears were or were not telling her plus a wicked cold to boot. Those are the breaks.

One of our neighbors also had a birthday party that night. Lily had worried for weeks that she would miss it. We tried to plan it into our schedule because I know how much it means to her- they have been friends for years and years. Of course now he's 13 and she's 11 so their paths have diverged a bit and I also worried that she might get her little heart broken because even though they are just friends, sometimes friend dynamics change around this age. I was beat and not feeling great when we got home after recital- Phil grills up some dinner and the girls head over to the party.  I kid you not 15 minutes later Bella is running in the door saying Lily is hurt and we can hear Lily wailing in the back yard. Turns out she stubbed her little toe on a toy box at the party and it's looking pretty broken. Sticking out to the side. Broken.

I hand her a banana so I can feed her hydrocortisone and ibuprofen. She is being very tough. Phil and I look at it. One of our famous stories is how lil Phillip was playing soccer with uncle Grant in the back yard, barefoot and broke his toe. Due to our general aversion to the ER and hospital(despite appearances) we try to play doctor at home. We are convinced it is just dislocated and try to pull it back into place. Not dislocated, broken. Er trip, X-ray, buddy tape. Lesson learned. Sort of. Fast forward 10 years. Lily- You aren't going to pull it like Phillip's are you? Phil- No I'm just gonna look at- PULL. Scream. A little better. Nope it's broken. Yes proud parent moments. It's a little toe. We ice, we administer pain relievers, it just has to heal . We explain this to Lily. Phillip comes out to see what the screaming is about. Lily broke her toe- OH man did you guys pull it? yeah that's how we roll. Just rolling with the breaks or pulling the breaks. I shouldn't laugh- but we are a week out and she's lived to tell about it with no permanent disfigurement. So poor girl lost her hearing aids, has a cold and a broken toe. So much for planning- those are the breaks. Sometimes things break and we see they are about to break and try to avert crisis. Sometimes you just have to deal as it pops up. Or out.

As we geared up for my last scan the week before these adventures, I mentioned the oven/stove is a fire hazard to Phil. Now it is well documented in burn marks on my cabinets- that it may not be the only fire hazard. But the thing is about to full up break. So post most recent MRI - Phil takes Jen all hopped up on ativan oven shopping. Now I highly recommend this. It is a trip. Also watch videos called HIKEA- people smoke pot and try to assemble ikea furniture- hysterical- because doing that on a good day is entertaining. But don't do drugs, drugs are bad. Unless you have a stressful MRI and are claustrophobic then they are a means to an end and prescribed. And the end is a new oven with a pretty blue interior. Seriously. All this inhibition- function, yada yada- whateves- this one has a BLUE interior! The OVEN inside is BLUE. I must have it. Commence island wide search for soonest oven availability and best price. September and Best Buy. See we try to plan before things break. Try. To Plan. You know how this is going to turn out right?

Scans- So results took awhile and some hunting and calling. The skinny is slight growth. We are where we are. I would prefer stable. But we are looking at 2 millimeter size growth of the region- which is small. But it is also in a 6 week period. But that could also be the difference in 2 measurements of 2 different scans. Lots of buts. My neurosurgeon would feel most comfortable cutting it out of my head. I understand that and it's what he does. I like him, he has a great bedside manner and really takes our situation into consideration. He is not opposed to waiting and watching(carefully) since we do not know for sure what the bits and pieces are inside the cystic lesion- fluid, tissue, dead tissue and definitely with mutants- we like to err on the side of caution. I could have tumor growing, I could have new meaner tumor growing, or it could be necrosis from the radiation which will heal, or it could be a combination. The good news is I do not have symptoms and symptoms are one of my biggest fears about the surgery. Because the tumor is in my cerebellum- although surgery should not affect cognition and how brilliant I am or who I am- I could swagger like a drunken pirate for awhile. Or forever. And not be coordinated.  Which not the end of the world but kinda puts a damper on doing all the things I like to do. Is it a certainty- no. But a consideration. Just weighing the balances. I think surgery will have to be an option- but I am going with my gut and don't want things to get ugly but need to watch it for a little longer. Not to mention the whole brain surgery planning thing- it's gonna take a major committee. I also am lucky enough to know some really rock star brain surgeons, and brain surgery patients who give me the straight info. SO we wait and scan again at the end of September.

Last week was one of those weeks I went into with a- I'm going to take it easy attitude. Which I know better than to do. Normal busy appointments and such but then the little normal things add up along the way. Like the Air Conditioner making really bad noises. Not the end of the world- it's not that hot here and we have power and fans. It's on the radar- and so were 2 hurricanes. We were supposed to go to Bellows for Labor Day weekend- but in light of the crazy potential weather- that was cancelled. Which probably worked out for the best because I had a bit of a breakdown. It happens. I don't talk about it- I try not share them too much- just because its not my favorite me. They happen. I'm not glossing over it- its just they are private. There are a lot of feelings that come with have little time bombs in your body and brain and all the unknowns. We don't have to share everything.

So one day when the garage door won't close and I'm late to pick up girls and it's not the sensor, it's not the battery, it just is sucking- I decide to close it manually. because it is easier. And we spend days on and off doing the manual garage door drill- which is a completely novel idea for the kids and I have to explain that back in my day we were the garage door openers- you were deployed once you hit the driveway. It was an honor because you were tall enough to manage. Rite of passage. When Phil gets home- it opens and closes fine. This is how it always goes down. Until Jen is late then it does not work. Now mind you it's a 10 year old garage door opener that gets SIGNIFICANT use. And yes the lil shits slap the button and I may use my elbow a lot because my hands are always full. always full. So when Phil tries to open garage door and pin is missing and now it is broken broken and mildly questions how "WE" may have broken it- Jen completely and utterly loses her shit. Not in a roid rage way but the I'm broken and don't want to handle one more thing kind of way. And this wasn't the first episode this week. There was an unfortunate event involving me just wanting to read the last few chapters of a library book before it expired on my kindle and the entire clan conspiring against me. It happens. I just needed a break. To not be talked to for a minute or 5 or maybe an hour.  And I feel bad because it's these times when we aren't in crisis per say(how the hell is that spelled?) that it tends to hit. I was busy but not frantic, no catastrophes- just normal shit. And it adds up on top of the big stuff and sometimes you get to - the breaking point.

So it's the first weekend of football. And Friday was a really really good day. Because that's what happened after meltdowns sometimes, you release all the crazy and can embrace the suck and also that frees you up to find the good. Phil sees the breaks and pauses football to spend the entire weekend fixing everything from shower heads to sprinkler valves, to garage doors. I feel bad because we should be sitting on the couch doing nothing.  I was relieved to not be packing up to cram 6 bodies in a 2 bedroom cabin with one bathroom no AC and centipedes. I know it's paradise and alternately sitting on the beach isn't a hardship but I was tired. And children still need to eat at the beach and I didn't make it to Costco to get the type 2 diabetes size box o pizza rolls to make life easy. But back to friday- I got to visit with my sister in law and nephews- which like living in paradise- they are a few streets over and we don't get to enjoy them as much as I'd like. SO that was good. And then Phil took me to lunch. Also really good- Did you know we have a Five Guys on the island? Yep we do. Those fries man. yum. Then we came home and I made some snacks and we watched the CU-CSU game and the girls made big blobs of sugar cookie buffaloes look like buffaloes. Yes I may be using food as a coping mechanism. Hence the oven being so much on the radar. We had homemade pizza and watched a movie all together and it just was. These are the moments. The ones worth breaking for - sure idyllic places and experiences on a perfect beach with a stunning sunset are always amazing. Sometimes the perfection is just in the normal broken moment. You have to break a little to know what's worth fixing and what you need to put back together. In the words of the very wise mutant 626-aka Stitch - (which can also fix broken skin...or material- and sometime snitches get them.)

Being the Bigger Person

Lily was my biggest baby. She's always been big for her age, even before she was her own human venturing out in the world. Her size caused many extra appointments and measurements. Sometimes it bothers her, we try to focus on positive self image.

Our house is not big. It is us and comfortable, cozy, quaint, charming, all of those words that people use to describe small spaces.

When I have meeting or calls or just chatting with a friend, unless the kids are at school, there is not a lot of privacy. We often joke that we have 1700 sq. ft and somehow the 6 of us end up in 3 of it. It's a valuable lesson, learning to work in the space you have and making it work for you. It's good for the kids to try and respect boundaries and small spaces and figure out what they really need.

Lily is in the midst of a huge growth spurt. Phillip actually called her slender the other day. After she postured in offense, she took the time to ask what the word meant. I felt kinda bad that one isn't in her lexicon. Yet the smile his definition generated -totally worth it.

The other day Lily complained of a sore throat and runny nose before school. There's been some coughing and the timing's about right- first couple weeks of school, chemo week, these are the times I expect to get a call from the school nurse that she isn't feeling well. We discussed the parameters before she left for school and that it is perfectly possible to make it through a day of school with a bit of allergies or a cold. Fever, diarrhea, puking, all those fun things are for staying home. Sometimes a good rest staves off a tougher cold, so if she really needed to rest we could talk about it- but I've been burned before. An hour of rest and then crazy monkey syndrome- bouncing off walls, wrestling siblings. Like with Phillip sometimes smaller normal sicknesses can escalate quicker in her system as her adrenal struggles to keep up. She is very self aware and tends to milk symptoms from time to time, but she is very good about letting us know exactly what's going on. In detail. At 9:45 I got the call from school. I knew by 10:45 she'd be driving me up the wall, but I went and got her anyway. A little rest sometimes can make a big difference.

When Lily got squirrelly at home, I had her load dishes into the dishwasher. She was less than pleased with that. I had fielded a few calls and she suddenly turned to me and says- you called me big.

Um yeah- I've been calling you big since before you were born. You ARE big. You've grown like 6 inches in a few months.

She says she knows she's big but it hurts her feelings to hear it.

I feel terrible but also defensive. How many times has she picked up a smaller girl her own age and commented on how cute they were? I ALWAYS point out that they may not appreciate having their size constantly be brought up as she does. But I did not want to hurt her feelings.

I explain that I did not mean to hurt her feelings at all and that she is wonderful and to try not to let the word big bother her because it is a really good thing. She stomps away. I am aware this is about dishes, but it is about other things too. I call her back.

Look Lily- you are a big girl. You have always been a big girl and it looks like you will probably always be a big girl. You have grown a lot in a short amount of time. You look good. I am so absolutely tickled I get to call you BIG. I am so glad that I have a Big Lily standing here glaring at me.

8 years ago I didn't know how long I would have you. No one thought it would be this long. You were very sick and very little from the chemo and they said you would probably be short for your age and have some growth problems, we would just face them as they came. Hoping with all hopes we would get to face problems because that would mean you were still there. And here you are, growing and tall and beautiful and it is amazing and it makes me very very happy to get to see you BE BIG.

At which point I'm crying, she's crying, we hug it out and she smiles. She is a bigger person because of the things that were supposed to take away from her. And I will gladly hunt down size 11 shoes for her big old paddle feet. It wasn't so many years ago I exhaustively and painstakingly painted each one of her nails on her much littler feet before every chemo. I painted the nails knowing the nurses might have to get creative with the pulse ox. I packed nail polish remover wipes and fresh bottles of paint just in case. Because I just didn't know how many times I'd be able to paint those toes. It's been been a lot and I can just about compose a mural on her big toes now. Kidding.

And I will smile understandingly as other moms lament each new phase of growth, sure sometimes it does go by rather fast. That is not due to the growing, its usually due to the exterior influence of distraction. I remember the time I needed to cling to the little things, as we do at times now. And we make time for and cherish the BIG things. The big feet, the hunt for clothes that are appropriate for this tween stage and non standard shape. I realize that on our timeline we cherish every milestone that we know was never guaranteed. By being in the moment and immersing in the now I am not missing the moments others want to go back and freeze. I try not to be overwhelmed by the urgency to get to it all at the expense of missing what's right there. Yet we do have to go forward, we are here to grow, to change- ourselves and the world and to be bigger. I hope they find joy in the little things, comfort in who they are in the here and now and always be ready for the BIG things that will come their way.

Steeplechase and Water Handball and the Rea sisters.

Phil loves the Olympics. Anything sports- competition- he's huge fan. He's also a huge fan of America. I like the swimming and gymnastics and bits and pieces here and there. I remember one summer we went to visit his aunt and uncle in Florida and Phil learning to juggle while watching the Olympics in their living room. Apparently that was the last year some record was broken and he reminded me we watched that race in Florida. Shared memory- he keeps those statistics, I can tell you how much garlic is needed in recipes. Hmm, all I remember is him learning to juggle- but I trust him. And yes his ability to juggle weighed heavily into my decision to marry him. And his love for garlic.

Our littles are pretty young in Olympic years, so they know of the Olympics but not all the sports. There is also not a lot of variety in sporting here in Hawaii- so they've really only been exposed to the basics. We are actually very excited to learn about Brazil as their uncle is moving there today. He met a lovely young lady from near Sao Paolo and I'm excited for him to have this adventure.  As I was prepping dinner one night- track was on. And Phil keeps saying- you have Got to watch this. So I obligingly wander over so he knows I am watching. The women are running, running, running- dude this is like watching paint dry- I have dinner to make. Wait for it- hurdle, hurdle, oh no- is that water supposed to be there? Isn't that puddle dangerous? Is this a Rio problem? How is the Olympic committee ok with this? Phil is laughing at me. It's Steeplechase. Hmm. I recognize the word- somehow thought it was related to horse racing- which this kinda seems like. But it's fascinating- they trudge through a puddle and can climb over the hurdles except for the one athlete- she ran right into the hurdle, ooh faceplant in puddle. This is great. How did I not know this was a thing? This could totally be a metaphor for cancering.

 Saturday I was ironing, getting ready for pictures and it occurs to me I haven't ironed in forever. wrinkles are a a part of our lives. It's kinda therapeutic- wrinkle, apply heat, wrinkle gone, progress. Tangible. I'm not too bothered by wrinkles, They add character. But- they would bother me on clothes in pictures- so there I was and Water Polo was on. Lily walks in, what is this water soccer? Phil and I laugh-she continues it can't be water basketball because water basketball has baskets and that's a net like in soccer. Bella hears the laughing and wanders over. What is that water hand ball? I've played handball before and its like that, but that's with water. Kiera- also wanting to participate in the laughter runs downstairs- Kiera- what sport is that? That's Water Polo. And the blonde for the win. She's not really blonde, but she's our blonde and we love her as much as the rest.

It was nice to have the Olympics to watch at chemo yesterday. Sometimes I hate to combine something someone loves with the cancer routine- but then again it becomes a good memory during a tough time. Steeplechase was on-so good for more laughs. There is just always that background fear that it might cause a twinge of sadness down the road- BUT that is when we make jokes to get through. Like at dinner the other night- the brother and sister in law were discussing college with the teen- which I am supremely grateful for. He's had the opportunity to chat with most of his aunts and uncles about their knowledge and choices and gotten some different input that he is more likely to listen to than out of Phil or I. Generally I listen and learn something new- like he was considering UC Davis in CA. My SIL offered to chaperone a visit since she travels to CA for work. Sudden twinge- snarky comment- Eh I've spent enough time at UC Davis- I'm good- you can have him. I caught them off guard and got the look from Phil- that said- I get it Jen but that was harsh. So I should explain.

In 1993 I was sitting in a senior class- don't remember which one and Phil and I were called to the counselor's office. My first thought is shit we are busted because we may have been known to be late to various classes. We had maniacal schedules being one of the first IB classes set to graduate and our teachers were pretty understanding about the stress levels. We didn't have time for a lunch period so we either ate in class or sometimes skipped a period to grab something.

We wander into the office and our good friend Rob was there, he pulls Phil aside and all I hear is, her dad. And I knew. Dad was traveling for work and had left a really strange message on the answering machine the night before and we kinda figured it was either a good business dinner with lots of drinks or he did the equivalent of 1993's butt dialing. It descended on me- that foreboding, I know this feeling- this is when it all goes to shit, again feeling. Our Counselor- a wonderful woman named Donna has my mom on the phone. She's at work and just got the call from Dad's boss. He passed out mid meeting and they took him to the ER. They weren't sure, but we suspected brain tumor. She was making arrangements for us to fly to California. She was weary. I was weary. Because this time we knew. With Bob we didn't really know. But now we knew. And sometimes that is harder.

We flew to UC Davis. They didn't want to let me in ICU to see him because I was a kid. I kinda wanted to throat punch someone and had enough experiences in hospitals at that point to say I've done this before and walk past the nurse. My memories of the time there are sharp and blurry at the same time. My uncles flew in to be with us- the Toms. My mom's Tom and my dad's Tom. They joked and made sure we were fed and watered. The hope was to get dad stable enough to fly home for surgery, but that wasn't possible, he started bleeding and they had to do surgery immediately. Which honestly was probably a blessing because UC Davis is a very good institution. And if Phillip goes there it will complete this bizarre loop. But memories and loss sometimes pop out at you when you least expect it and the mention of UC Davis was one of those moments.

My other profound memories of the time were the skanky hotel we stayed at nearby and the morning walks of shame by a fabulous Alice Cooper drag queen. I mean technically not a drag queen but maybe I don't know- although I had exposure to ER's, ICU's and hospitals- I was unenlightened on the inner workings of the selective sort of professionals that hung out near our temporary UC Davis home. Which also segways into the STD discussion mid hospital stay.

In dad's room, the standard white board- doctor's name- patient notes- today's nurse. Anarea was the day nurse. Dad had the mischievous smile and winked at me when he noticed me studying the board. I had been to California, familiar with a lot of different names. Anarea was different, but not strange to me. The nurse comes in, checks vitals and dad introduces us to Ana. He said we might know her sisters, Di and Gonna. I didn't know anyone in California so I assumed he was joking, but there was that twinge- the beginning of the losing of the mind. I look at Tom, and we are all thinking the same thing. Fucking brain tumor. Ana laughs. Goes over to the white board and adds a line to the second a- turning it into a d. The stem had been wiped off by accident. She has obviously already had this discussion with dad and he lets us know she sees a lot of her sisters in nursing- diarrhea and gonnorhea. And there was dad. The sense of humor, the piece of him we knew dominating the room despite the big part of his frontal lobe now missing. Sometimes you just have to laugh at all the shit because otherwise you might just faceplate in it.

Needless to say I have brain tumor PTSD issues. It is an interesting exercise in urgency and denial. Some days I am ok- other days are sheer panic and terror. I ground myself and focus on the moment and am so grateful I feel good. Whether the energy is artificially induced from the steroids or whatever- I am using it for good and counting it as a blessing. I know so many hate the phrase that everything happens for a reason, but that phrase grounds me and gives me focus. Notice all the active grounding. I don't lose sight of the fact that there may be a reason, I just don't know what it is. Sure it's frustrating. Sometimes the reason doesn't make sense and it isn't good. But I need to believe that this path, this journey has purpose and the only way to travel it is if there is purpose and to say there is no reason- eliminates purpose. I hesitate to call it "getting things in order" because well that feels more terminal than I do right now. It's not nesting because well- the tumor baby I'm growing isn't the little bundle of joy I'm prepping for. I'm still in search of the right term. For now I am going with Living. And for my mom and my dear friends who constantly ask- how are you REALLY? I am really busy and feel better than I have a lot of times in the past 4 years and I try to make the most of it- which I hate to say sometimes is scarier than feeling shitty. Why? Because fates sometimes give you a calm before the storm. But I do not want to waste the calm because sometimes storms blow over and especially if it doesn't. I keep busy because I can and will until I can't. run run run, hurdle, hurdle, pond. And watch out for the Rea sisters.