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.

Picture Perfect

The steroid craziness has leveled off a bit. I can sleep for a few hours a night unassisted. I still end up putting myself in time out a lot with the anxiety/anger management part of it.

We finished up week 2 of school and the excitement of being on time waned. Lily and Bella are both Junior Police Officers at Iroquois - so that means being to school before 7:15 and a good 20-30 minute buffer after school. Kiera had a road trip with her performing group to the Big Island to do Amazing Food Detective. It's a Kaiser sponsored educational skit about healthy eating and exercise. She has a ton of fun with it, but has to miss school to do it. This week's timing was a tough one for her- she had a lot of AP History reading and was exhausted and fell behind. There were tears. And arguments. But she will figure it out. Her solution was to get up at 3 am to do it- being the stellar mom I am- overrode her alarm. I'd rather have her fail a quiz, she needed the sleep. And this is why 15 year olds don't get to go out into the world on their own.  Phillip is a senior. He did some class shuffling and we are talking colleges but he seems pretty stressed about it. We are managing. We really need him to have a driver's license and have a 3 hour chunk to be finished with the driver's ed instructor hold up. The same driver instructor who has cancelled multiple sessions and who now let the state car registration lapse. Yeah. Seriously. Lead by example people.

The week was so normally normal I sat back last night and just smiled. We went out to dinner after our photoshoot at Buffalo wild wings- because when you spend an hour doing make up- you gotta take that on the road and let's face it we are party animals. Each family member was on their phone or the silly gaming system- which is a huge NO-NO in our house. But sometimes even this rules just have to be given a rest- we won't make a habit of it. Everyone was still talking and having fun.

 We got the all clear on Lily's arm on Tuesday- meaning we will watch it but the orthopedic doc really isn't concerned.  Had all the kid dentist appointments on Wednesday- only 1 cavity in Lily- whose mouth is a mess from genetics and chemo- so really not a bad visit. I got back to Physical Therapy on Thursday and had acupuncture for my knees which have been a bit stiff, probably from steroids or all the cleaning I've been doing on the steroids- so from the steroids... I got to visit with my nephews and SIL's sister -which again I'd like to compliment my brother in laws all for having such outstanding choice in women. They all come with pretty cool families too! Thursday we got to visit with a high school friend and her wonderful family at dinner in Koolina. I know a lot of really amazing people and am so grateful when we get to reconnect in human form. Friday night we had Rudy's hot dogs, living room dance party and watched the Olympics. Extraordinarily normal week and it was awesome.

One of the big side effects of steroid use is the weight gain. Big round puffy face. tummy. Never ending carb craving. That is crazy- like pregnancy cravings on steroids. hahaha. So when I went on them and Debbie Leanne, photographer and friend extroidinaire contacted me to schedule our family photos- I knew I had to jump on it before I look like blimp jen. Now it is shallow and I typically don't give a shit- appearances, yada yada- but after awhile it sucks having your body bloom out of your control and not in a good way. I want to look like me. I do not want to be remembered in the sick puffy looking way. Don't want to die either- so balance. And take pictures before I swell up or mort.



My next MRI is Saturday the 20th, I decided we needed to do it before then. Yesterday was the big day. I even practiced putting make up on last week and watched you tube videos and shit. There is this thing called contouring where you look like alien Simba from Lion King and then with a bunch of dabbing and such you camouflage some of the round face ness. That's the kinda thing you don't want to pull out for the first time on game day. Lest one wants to look like a chimney sweep.


Even with practice, it takes time. The getting ready bit. And some mental energy. I actually won the photo shoot through a contest. I tried to share the gift with Phil's family while they were visiting and let's say Deb wasn't having it- she made sure I got the full experience- which includes a conversation with her discovery consultant. I spent 2 different days weeping on the phone with a stranger. I told Phil that and he tried to refuse to speak with her. I told him she wouldn't make him cry. Honestly it was good therapy and it helps them get to know us and what we want. Phil finally talked to her- and didn't shed a tear- my tough lobster and raved about the therapeutic aspects of it. All kinds of therapy-find what works!

Saturday night as I was buffing and blushing in between girls running in and out- I need this- I need that- hair tweaks, makeup tweaks- do I need a bra?(if you have to ask the answer is usually yes).  I think of all the lovely beautiful ladies who do this daily and god love ya for making the world beautiful- I just do not have the stamina. BUT- like all things- when it counts, I'll put the time in and was over all pleased with the results. The Absolute best was when I drew Bella light eyebrows and she squealed in delight- she actually squealed. It was awesome- partly because I remember the mona Lisa chemo phase and it's a defining moment.  And then I wander downstairs and phil is in basketball shorts and a tee shirt chatting with Debbie. WTF! seriously 2 minutes later he is changed and downstairs and we are ready to begin. I think I just logged like 12 hours in shopping, prepping, planning and primping for this- AND 3 MINUTES! And he will look adorably handsome in every shot. it's annoying sometimes.

The shoot doubled as Phillip's senior pictures as well. Each kid got a special interest time with Debbie- but I really wanted to play up Phillip's piano playing and since logistically getting a grand piano or any piano on the beach became a bit of a challenge. So we got creative and the teen soon to be adult- played along fabulously. Sometimes a baby baby grand has to do the trick. Think Schroeder- yeah that's how we roll.

Here, there isn't a huge to do about senior pictures- in order to get a senior pic in the yearbook- you have to go through Lifetouch -schedule a special appointment and it's a bargain at $45. I guess it eliminates some of the wild card factor and haggling over what's appropriate and not since they are plain old school pictures. I guess you can bring an item of flair and get a couple poses- one in cap n gown. But when you have amazing scenery like this 5 minutes from your house- it seems like a shame to not use it.

At one point I glance down on the beach and Phil and Bella are writing on the sand. I guess she had written my name and he added +Phil and it was cute to see them conspiring and their respective footprints.

It was a beautiful night, the wind wasn't too bad- the colors were good and it ended up being a lot of fun. I am really excited to see what Debbie got- I know they will be undoubtedly US. Maybe not technically perfect but perfectly us.

Steroid Deep Thoughts: Undercurrents

There are so many undercurrents in our world right now. Our world. Earth, not just planet Mallory. Undercurrents of politics, violence and upset. I feel like I've had a lot of talks with the kids, with Phil and we are working through some really bigger than us issues.

It's scary as shit. And really hard when you are dealing with tough shit. Sometimes it feels like everyone is blissfully moving along with their lives around you and THAT can be hard enough when you are up to your eyeballs in cancer death threats. It is a choice not to wallow in the only if's. It is a daily affirmation and effort to BE in your now, deal with your shit and not try to compare or look at someone's else's world and somehow rank it all. I would truly like to thank our circumstances for the continual throat punches of reality that take me so far out on our own little island, that I've embraced the perspective. It's not a competition. Like no 2 cancers are the same, neither will anyone's path be. Instead of judging and being pissed someone has what you wish you had- be happy for them. Or just walk away and try to enjoy your life. If you want it- GO for it. If circumstances don't allow, will.not. allow. Then you and you alone have to find your happy. This doesn't mean we always are happy and dang skippy sometimes you have to fake it a bit to make it and fucking settle. By fake it- I mean put on that smile and be a decent human even when you want to barrel through crowds of people screaming profanity. By settle I mean play with the one remaining boob you have left. Define boob as you will.

Other times it feels like everyone is up to their eyeball in their own shit. We have too many people who are struggling, battling through crowds screaming profanity- posting, twittering, snapping, whining how upset they are with everything-Trump sucks, Hillary sucks,  no you suck, stop helicoptering your children, pay more attention to your children, sick of this, sick of that. Voting in this election this year is like having cancer in your brain. It might be ok. Everything might grow and swell and you might have to have surgery and nothing will ever be the same again. Or it might be fucking OK. So what do we do- you clean the house, you teach the kids to be decent humans because THEY ARE our future. We BE decent humans because we are the now. Everyone may ignore us but maybe just maybe someone might be paying attention and take cues from us. BE the changes you want to see, no matter what is going on around you. Do not blindly follow someone else's path with promises of change- it's not YOUR path. You can walk along side them, help them but look around- is this where you want to be going? Your path will be forged by your steps. They might actually be helping you around an undercurrent.  Each one of us has the capacity to make the choice to be calm in the face of crisis. Be the leader that others look to and try to emulate. Do we really want our kids running around posturing violence and puffing up their entitled little chests about how better they are, just because they can? Part of being #Blessed, is not the slactivism, the smug faithless announcement but rather NOT taking the opportunity to share in whatever good fortune you have. Not so blessed is it?

My grandmother existed on a fixed income for decades and she was the most generous person I have ever met.  With her time, her words, her food, her money and always always her prayers. She never taught me these lessons in any sort of core curriculum but the lessons were learned. The woman lost her husband in 1958 to a disease that might as well have been the plague for the stigma attached to it. She raised 5 kids and worked in a time where women simply were not considered competent to do anything but raise kids and even that with some good male supervision. And here we are a mere 60 years later with a woman President candidate and a billionaire.

 I would also like to point out that 8 years ago we elected our first black President. It's completely appalling to me that I have to put words like woman or black and first in front of the word President or anything for that matter except an official document where that identifier is somehow needed. Because we are all people. Somewhere along the line they did something to put themselves on a presidential path- work hard, compromise, make lots of money, investments of some sort. And many would like to blame everything on a single person, the President and have completely lost sight and perspective of the big picture. It is a democracy. There is choice even if so many facets of the system are outdated and broken. It is OUR broken system. The foundation is still solid. If you don't keep up with routine maintenance, you are gonna have to pay for the big repairs or Get up off your ass and fix it. You don't have to go to congress, you don't have to be in politics to make YOUR world a better place. Invest in your family. Your time, your words, your money. Invest in your community. Your time, your words, your money. When you have no time, no words, no money, Then act. Act kind. Act compassionate. Act responsibly. Act like you are not the only person who matters.

Everyone has battles and although it feels like everyone is airing their battles on social media- the ones with the biggest battles are the ones you probably have no idea about. THOSE are the people we all are letting down, those are the ones who do whatever needs to be done, to GET IT DONE. Or they die trying. Which means sometimes their kids don't get 100% of their attention- but their kids get 100% work ethic. There are people who could literally go postal at any second(remember when the post office was the scariest place where someone might lose it? Now planes, schools, theaters, clubs, EVERYWHERE is scary and you can just about guarantee someone might lose it). People are losing control of their anger all around us and it is ridiculous. The violence is ridiculous.

Social Media is like standing on your doorstep and screaming. Your neighbors are gonna hear you. Your friends are gonna hear you. The poor guy just trying to walk his dog is gonna hear you. We have taught ourselves that this is an appropriate way to behave. That everyone is allowed their feelings and actions and to be who they are. Ok. But your feelings and actions do affect other people- you cannot choose how they will interpret them but you can choose what you put out there for them to interpret. And if you don't give a shit what people think- why on earth are you putting it out there if it doesn't make the world a better place? Your world, their world, our world- whichever world- it is the same, it's only different when we think it is. Sometimes the water looks calm. You have no idea what is under the surface. There are undercurrents. They are dangerous because you can't see them. You definitely can not stop them. So you avoid them or you try to keep your ground. If you try to fight them- you are literally just wasting energy. Take that energy and make it positive. It feels better. Sometimes you just have to let the undercurrents be, walk away.

Being at the hospital a lot lately, I see people at their best and their worst. Stress, exhaustion, grief and pain bring out the best or the bring out the worst. I will again say it- because I tell my children- YOU have a CHOICE. Every feeling, every moment you have the ability to make a choice. Sure it's harder when you are tired and stressed. Even if it is in response to something out of control, you choose how to react. When someone is stomping around the vendor yelling at the poor cashier, I want to tell her to stop being an asshole as I watch an older man with unsteady hands trying to pour hot coffee as she flails around near him. Yet I carefully move myself between her and him and hold his cup. Sure I might get burned, but we might both get out of this better off. I don't know why she's there, what she has going on or why she thinks nuking artificial ramen in a styrofoam package for 3 minutes is a safer option health wise than the recommended 1.5 by the cashier. It's not even FOOD.  I do know that my engaging her will not help. She is on her path and it unfortunately bisected mine. I do not want to go down that path. She stomps out. We all live. I don't know if she is having a bad day or just a bad person. But she put a whole bunch of negative out there that I had to throw a bunch of positive on to balance. Hospitals are exhausting. Draining. Any place can be. Share your energy- the good kind, because if you have some to spare- there's usually someone nearby who could use some.

I'm not saying don't vent, don't feel the ick, or ignore the tough stuff. Do not put on the rose colored glasses, unless you need to rock that look. Then rock it until further notice. Just don't throw negative out into the world unless you have a plan for cleaning it up. If you can't try to make the world better for you, why should someone else?  Mind the undercurrents. They could pull you under or change your path. You may not want to take the path it is trying to put you on, but who knows what you will see or do along the way.  And sometimes there might be someone struggling with the undercurrents and they might just see your path and travel with you for a little while.