Sunday, November 13, 2016

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.

Wednesday, November 9, 2016

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.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)