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.

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.

Day 2-3 Steroid diaries. Shit hits the Fan

I've been bad about journaling and my friend Cheryl likes the daily reports so I figured I'd start with the steroid reports. You know- days and days of me fighting the inner hulk, the tales of insomnia. My friend Murphy well- he and karma(who sometimes is a bitch) seem to be in cahoots.

After a few hours of sleep- I got up and started catching up on nonprofit work. I'm still woefully behind, but I had plans of productivity- the kids go back to school next week- I had all this week to get organized......famous. last. words. 

Tuesday starts out good. Right until Phillip wakes up and wanders into the bathroom. He's 16- I do not inquire as to what goes on in there I just set out water usage and cleanliness guidelines. After awhile I hear the sounds. Those sounds. The puking sounds. Then the explosive sounds. Oh- I see how we are gonna play this Murphy. Awesome. He opens the door- drenched in sweat. No fever. I kinda don't want to go anywhere near him- but it's kinda my job. I ask him about sugars and insulin pump function(there was a small issue with it last night, so if the site goes bad, he could build up ketones which produces ketoacidosis- vomiting, just really bad for the body. Critical and quick. So I test his sugars and ketones. Sugars high, ketones low. Ok. He takes some insulin. This sets the tone of the day- he wants to rest and this means every 2 hours he needs to check blood sugars and ketones. My job is to remind him, aka be the nag. It's in the job description. I remember having a concussion as a kid and only wanting to sleep but not being allowed to- it sucks- but...job description, triage, health, hospital avoidance, yada yada.  

Kiera and I had days of organizing planned- it's easier to start the school year with a little order because it gets busy and hectic fast. We have to run to the post office and the store for bins- after 2 stores we cannot find what we need. Standard. Kiera is texting Phillip and Lily for updates. Phillip is not able to drink without throwing it back up. We are at stop 4, it's time to ditch and take care of the boy- its after noon and he's been puking since this morning. We grabbed chicken noodle soups, jello, ginger ale, maybe a swimsuit for Kiera and a couple school supplies and we were out. Sans bins- the original purpose. But that's just how it goes sometimes.

Phillip is in bed and he looks awful. I know mumbling grunts in response to questions are kinda the norm for teens- but this is more. We are getting to the point I'm gonna have to make some unpopular calls. I take his blood sugar and ketones. 300 and .6. Damn. He can't keep water down, he hasn't peed. damn. Still no fever. I have him give himself some insulin- god bless the pump that does all the calculations for you and your sick kid.  I call Phil first. damn. See I don't have Dr.P's pager in my phone- I usually call the wonderful nurse Drizza and she makes everything all better. Phil says go directly to Dr. P. damn. I know what this means.  After I page her, I start throwing stuff in a bag.  She calls me right back and I explain what's up. She knows we don't call unless it's big. She's already giving residents orders in between asking me questions and my trying to rouse answers out of Phillip.  She tells me what I already know, dehydration is bad, ketones, bad, it's best to stay ahead of this and come in and she's trying to find the easiest way for us. I appreciate it so much because well I don't know if it's the steroids or adrenaline but I'm worried. Usually I avoid the hospital at all costs but I've also learned- sometimes caution does save a lot of pain in the long run. The quickest option she has for us is the ER- she promises that she will call ahead, they will be waiting for us and she will meet us as soon as we get there. She warns me if there is the possibility of admission. I realize this and we both know we are hoping to avoid that. I ((heart)) her. How quick can we be there? Since I've already packed my overnight bag(in order to avoid an overnight visit the overnight bag must be packed and ready- it's a rule)- I tell her if there's no traffic maybe a half an hour. I am smoking crack apparently because I just jinxed the fuck out of this. Yeah I dropped the f-bomb. completely warranted. would do it again. And not mention traffic or estimate being to the hospital in 30 minutes. ever.

I stuff Phillip's supplies in his bag, grab him a sweatshirt, continually tell him to get dressed, like no really, we are leaving, like I know it sucks but we have to- like really I can not do it for you- you are huge- buddy just flipping put a shirt and shorts on and lay on the couch. I grab the emesis basin, line it with paper towels(learned the splashing vomit in the car lesson the hard way....more than once. )Water bottles, towel- Lily helps carry everything to the car. Kiera has ballet, so the littles will be alone for a couple hours. fuck. I forget they are still little and even though they can stay alone for a couple hours, I don't know how long we will be- I can tell they are worried. As we leave the neighborhood- I call Phil to let him know the plan, I call My wonderful sister in law's sister to see if she can take the girls, I call Kiera to make sure she has all the numbers and will lock the door. As we get about halfway to Tripler, traffic stops. Yep I did that. way to go jinx face.

Phillip is hanging in there but the way he is shifting around tells me- vomit is not my only worry here. Not much we can do, I try to talk with him to distract him. It's clearly not helping, he tries to sleep. We get to Tripler well over an hour and a half after planned. I park by the door- where there is no parking- it is truly truly cruel the lack of parking by the ER- but that is a discussion for another time. Phillip says- I have to go and is moving at a slow but determined pace. I throw the emergency lights on- which is my small attempt at signaling- please don't tow me I need to emergently help my son to the bathroom before the shit hits the fan. He makes it. The lady hobbling in front of us is hacking on a level I hope it is seriously not contagious. I get him checked in and the receptionist just hands me his wristband. The noises coming from the bathroom are fairly explosive. The triage nurse peeks out and I shrug- she says to just bring him back when he's done.

When we finally get him over for vitals, the nurse is amazing. Her daughter has diabetes, she knows the drill and asks the right questions, like- is this diabetes sick or does it feel like something else? Phillip says definitely like something else.  Dr. P join us and hugs me and says I'm looking pretty good- which is not to say smelling good because well I'm pretty sure I hadn't showered recently. She mentions she expected us sooner and I explained traffic had other plans. I take the opportunity of Phillip being in capable hands to run and park the car. It is now late enough, parking is not a problem. thank you traffic? Phillip gets some zofran and a sip of water.

A room isn't immediately ready, so we wait a few minutes until Triage 2 where they give him an IV and draw his blood and then take him to a room. I know things move kinda slow from here, which is ok- that is a good sign. When things move fast I get twitchy. The attending stops in and sounds grateful that Dr. P pretty much ordered everything needed and they just had to set it up. I round up some blankets for him and pretty soon he is all hooked up to the machines and some fluids. Within the hour he is starting talk to me again. The fluids helped tremendously, he was pretty dehydrated. The water bottle I grabbed is sweating all over my bag so I ninja a special Koozie for it out of a napkin and Coban wrap. Phillip is not impressed. He is doing better and my role is to hand him his water bottle whenever he reaches- he's reaching more and more. Nurses are in and out- it's right around shift change. His blood work is trickling in, so far so good- no alarms. He doesn't even have ketones. Um yeah well maybe our old glucometer we use for ketones is set to 2011 because the ketone strips I could find expired in 2012 and maybe that might not be the best. The doc shrugs, probably didn't matter, as dehydrated he was, he probably was throwing some. She orders some new strips for us. And some zofran. As soon as he pees and finishes the fluids, we can go. He is ready to go and wants something to eat. what the heck. I'm glad, but dear God. I look at the clock 3 hours- I think that might be our Tripler record. sweet. This ensures that Phil will competitively commandeer the next ER mission in order to beat my time. mwah ha ha. yeah I know, jinxed it.

We stop to get jamba juice and I call and let Phil and the girls know we are on our way. Phil asks Phillip if he wants anything from McDonald's. Phillip looks a little green. He passed the dad test. We make it home knowing it's going to be a long night of every 2 hour blood glucose checks and keeping him hydrated. I am thankful for the steroid energy. We get all the littles into bed and I start the cleaning routine. Laundry, kitchen- I dump out both of the boy's bags, glucometers and such into a bin and proceed to clean and try not to gag. We are lucky if this isn't the plague. Teen boys are gross. We warn the sick child there will be big discussions about this when he is feeling better.

I am feeling exhausted, Phil is drained, I check Phillip's Blood glucose and Ketones are measuring on his glucometer.  I have him give himself some more insulin. I'm wondering if the meter needs to be calibrated but I can't find the darn solution and I'm pretty sure if I did, it would be expired. Damn. Phil says not to worry, it will be fine but I know I won't sleep so I run to the drug store and grab some urine ketone test strips. I feel like I'm out of diabetic crisis/sickness practice. This is a good thing. I don't have much faith in the urine test strips. But more so gonna compare to the glucometer. So on and so for the next few hours. And of course when I get back and wake him to test ketones and sugars, he has a fever. So that's another tally for viral/bug/plague. I finally laid down on the couch and just closed my eyes when Bella boo comes down, her tummy hurts.  Well damn. I don't want a house full of puking, but if it is a bug then I know it has to run it's course and I also then know that Phillip just has a bug. Or that he and petri dish are licking the same plague source. I send her upstairs to get her pillow and I am following her to grab the other emesis basin when she dives into the bathroom. Now is a true proud mom moment- Bella is a notorious bad puker. Like everywhere- you could be holding the bucket under her mouth and she would pull away and splatter everything. She made it to the toilet. Yep. I done good- big milestone.

I grab a ponytail holder and tie her hair back, in a gesture she hopefully will repeat for her sisters or dear friends many many years from now. I get her cleaned up and settled on the couch and go back to clean the bathroom. It's a superficial job until morning as I have to supervise the accuracy of the newest puker and then it's time to check the diabetic. I take the chance to try to sleep next to Bella on the couch, but my head is spinning, my stomach feels off and I hope it's just the adrenaline and steroids and lack of sleep. I drink tons of water. It is Thursday. It is a new day. I can do this. My hands sting already from the incessant hand washing. I really don't want to puke. I think it's probably bad to have that much pressure with a brain tumor in the cerebellum, but I can only do so much.

The rest of the wee hours are a vague blur. I remember Phil getting up for work and saying goodbye, then chasing my steroid dose with some coffee. Good luck stomach. Then setting about to disinfect all common surfaces and loads and loads and loads of laundry. I called to cancel my ECHO which dang- gotta reschedule that. I call nurse Drizza to check in and ask about the worthlessness of urine ketone strips. She always makes me feel like I'm not an idiot, I appreciate that. By midmorning Phillip perked up and was laughing hysterically over some silly internet something- Lily helped me clean her and Bella's room, Kiera remained quarantined in her room- she doesn't DO sick. I texted my Sister in law with tons and tons of apologies that we may have exposed them to the plague. So even though it completely sucks to be on steroids and have 2 sick kids- their bathrooms are a level of clean they have not seen in awhile. It is a bit empowering to know that I still can function in normal crisis, albeit with performance enhancing drugs. And somewhere in there Phil came home from a really long day at work and it hit. The what on earth will I ever do without this woman? Will it ever get easier? But mostly- WHAT THE FUCK. Because part and parcel- it's normal sick shit. It happens- people get sick all the time. But during a chemo week after a really long ass few weeks- it just slams into you sometimes. Was it the hardest of weeks- nah. Top 10- not even. It just tends to be cumulative and you get tired. And sometimes you want to get bitter or pissed, but then you realize as always - it. could. be worse. So instead of grabbing the bleach spray, I grab the husband and we go to bed and although he sleeps, my mind won't rest but I know he needs me there- so I stay.

Day 1: Steroid Productivity

Ahhhh yes. One of the up sides of steroids- the almost manic, burst in energy. 12:35am and it may as well be 6 am. Post coffee.

The discussion with the neurosurgeon went like this...

There is growth(we know that) words words words words, spectroscopy background- this part fluid, this part, probably tumor. It could be necrosis, it could be mixed necrosis and tumor, but it looks like some growth is tumor. We can't know for sure unless we cut it out.

Well GDMFCSSOB.

But good things- no symptoms. We can treat some of the swelling with steroids, and watch the growth. He is comfortable waiting 6 weeks from the scan to rescan which is 2-3 weeks from now. That doesn't seem particularly far away. IF it is stable(please please please please be stable) we wait and rescan in a month to 6 weeks. IF it has a minor growth(please please please be minor to stable-we are actually hoping for necrosis at this point- lesser of the evils) we have a serious discussion about surgery and what exact point we need to control what's going on and we will rescan. If there is growth(GDMFCSSOB) then we discuss surgery. We go over a little about the surgery and have the- some unpleasant side effects but buying time discussion. I know all of this. It ALWAYS sucks to have this discussion and I've had it far too many fucking times in my life. For me, for others.  But then again here I am. Let's do this. Let's dance.

Phil is pondering. He is very calm, even, pragmatic. He wants numbers, percentages of risk, mm-cm in growth, what stages of growth mean what for discussion, timeline, a plan. I can see he's got about 6 different pages loaded in his brain and already emergency planning, drafting schedules, trying to figure out plan A, B and C. I see it starting to dawn on him. He is a do not worry until you have to person. We are getting dangerously close to have to. And somehow this is the shittiest part for me. In the waterfall of tears that fell last week- the worst are driven by the how much this impacts the ones I love.

The discussion on steroids goes like this....

doc: I think we should try some steroids. You've had some problems in the past?

Well, yeah I kinda get this roid rage problem. It's noticeable. But I guess as far as side effects go- well there's the acne- and the insomnia and the anxiety, and the carb craving. indigestion. Minor but annoying. But if swelling is going on that's bad, so we probably got to deal with that. Can we try a low dose to start?

doc: I'd like to try 8 milligrams to start. At least the first day then we can decrease to 4.

Ok, how about 2?

doc: hmm. ok, I'd like to still do 4 milligrams to start, 4 times a day then 2 milligrams 4 times a day.

Um- wait, I was talking about 2 milligrams a day- total.

doc: sighs. You know how you react. what about 2 milligrams twice a day, or you could take 4 milligrams all in the morning.

I will do what you think is best( I will not like it but this negotiation is telling. Doc doesn't like to use steroids unless he has to).

doc: let me put the order in, you can go right down to radiology and schedule your MRI.

They won't have it ready til tomorrow.

doc, confused: it should be ready right away. (walks us to door)

oh yeah, your order will be there but it takes the radiologist 24 hours to review it, yada yada.

doc; but they know your family down there. He stops, thinks- 2 milligrams, twice a day is ok but call for any symptoms or changes.

I know right, somehow still, no. It takes 24 hours to schedule. (And we don't have a family suite or a parking space either, but somehow we manage. The valet dudes' are grateful for our contributions towards their kids' college education and have been very gracious and I think Mutnt has an honorary spot with them thanks to the Phil Mallory tip on the way in and way out system.) We wait far too long for a prescription of dexamethasone that I already have. I don't want to talk about my home apothecary. It's also fairly difficult to dispose of expired meds. Another pondering for another time.

We get home just in time for Phil to run Kiera to dance class. Lily comes and hugs me. Did I mention she offered to come and sit with me at chemo- because it would be fun. She worries about me and I think this is her way of trying to hear what's going on. That or she thinks we spend the whole day eating out without her. I decide to have a talk with her tomorrow. Ease some of her fears with realistic optimism.

I can tell Phil is drained.  We have to stagger our dealing with this to accommodate our supporter/supportee roles. We argue about stupid stuff , because that's what you do when you are sad and mad and stressed. And we will meet somewhere in the middle and hug it out and help each other through this.

This morning I eat something to protect my stomach and take 4 milligrams of dexamethasone. By 9 O'clock I can't sit still. Phillip and the littles have piano and Kiera is helping me collect bags for goodwill. I have to drop medical papers off at school for Lily and we might as well declutter in the process. Lily and Bella want to go too- so we wait until lessons are over. We talk about house cleaning after and the plan.

We get home- I make lunch and since they know it's time to clean Bella asks Kiera for a ballet lesson. After 30 minutes of ballet- suddenly everyone disappears, except Kiera- she wants to clean. I find Bella asleep on the front room floor and figure it's probably better to let her sleep. 3 hours later we have organized a pantry, the kitchen desk and a shelf in the cabinet. She has to head out to ballet and makes me promise to clean off the table for dinner. She knows otherwise I might sit down and not get up. Because this is a lot of activity for me day after chemo. But- roids.  I look at the clock- it's 5pm. I check in on Facebook land and chat with friend. There is no way I'm taking more. I'll never get to sleep. I clean off the table and fix dinner.

It's almost 8pm when we eat. Add bizarro time warp to steroid side effects- up side is I still have energy to watch some tv with Phil. And read for an hour. And then I try to sleep and well, here I am. This is not bad, the anxiety isn't too bad. Except it is 1 o'clock and I'm awake. The quiet is kinda nice.    I'll schedule the MRI tomorrow, or thursday when I go in to have my ECHO. Until then I will try to take advantage of the up sides of this new phase.

Man's Best Friend

Phil is my best friend. He's my husband, the father of my kids, but when it comes down to it- he is the person I want by my side when shit gets real, when I need to have an ugly cry or when I just need to laugh.

There are times when I want to strangle the ever loving shit out of him.

This is not one of those times. We have a history of hugely inappropriate laughter in doctors' offices. So last week we are in the neurosurgeon's appointment. On the way I hit 2 flipping birds- they fly into cars here- some sort of natural selection I guess but it really puts a damper on the day. So I'm mulling over the loss of life- or killing proficiency as Phil calls it and wondering if that in my attempts at meditating and harnessing energy to heal I've created a weird force field around my car that birds are drawn to - when a golf ball smacks into my car door. This does not help my mood or opinions of the "sport"of golf. And clearly I'm flicking meditating wrong now too. Fortunately traffic comes to a screeching halt on the highway- so I call the golf course to report it. I will have to swing by (ha ha ha) after my appointment. This really doesn't seem important- dent in car, tumor in head. Kinda got bigger fish to fry. But we will see. This might be a principle thing.

So back to the exam- I have to go through the neuro tests. Which I am not great at under perfect circumstances- much less the weight of brain tumor and trying to pretend everything is just fine-land. Tough- nose to finger- nose to finger. Reflexes. Walk back and forth. On tip toes. No really, on your tippy toes. Ugh. Hop on one foot...

Phil: Bark Like a DOG!     simultaneously  me: I WILL NOT BARK LIKE A DOG!


If you haven't seen Coming to America, shame on you. But here's the clip that as the neurosurgeon looked on in horror- I had to explain because Phil was laughing so hard he couldn't speak. Sometimes you just gotta laugh to get through. I'm sure listening to how your best friend has a tumor in her head sucks donkey balls so I'm giving him some leeway here.

I've had lots of friends in my life. Really really good friends. I have had some really really shitty friends.  When I was a teen, my dad used to say I had a problem with strays. I thought it was that I'd been adopting furry friends with issues since I was little. He meant my friends. I see someone in need and I want to fix it. Maybe it's because I read every Judy Blume book as soon as I could. And Reader's Digest by the cart full. Maybe it's just who I am. I've always been uncomfortable in groups. I'm much better with one good friend at a time. Once you are my good friend, you will always be.

Adopting the Air Force Lifestyle meant a whole new string of best friends every few years. As much as the good byes sucked, I know I have wonderful friends all over the world. I've dealt with my fair share of mean girls and sorority girls, not all are entirely bad but I do have my limits. Mostly I learned that people's differences can both infuriate me and make me better if I appreciate them for who they are. If it does not make me better, then I limit my exposure to them.

Almost 8 years ago, I was out doing yard work in the front. A car pulls up and a lady asks me something or other about what I was doing. My first thought was- dude I'm trying to squeeze 3 hours of work in a one hour nap time - really don't have time for this. Then I see two little faces peeking at me from her back seat. Right around Kiera's age. Kiera was the social one. So I chatted with my new neighbor Monica and met her daughters Sophia and Olivia. Monica and I had many adventures in the years we were neighbors. Redid floors, painted, crafted, parented, friended. She became my kids' other mom- as well as mom to most of the neighborhood. If something broke- either she or her husband would surely know how to fix it- mechanical, inanimate, human or pet. When they moved last year, it took me months before I could even get around the huge hole in my life to call her. Mostly because doing all the shit she used to help with took a while helluva lot of time and energy.

I am not always the best at keeping in touch lately. But I also appreciate how busy everyone else is and that everyone has their own crises. When I do get to chat with my friends, even if it's a quick message stream- it feels like a luxury, yet the true friends I've kept over the years are the type who don't hold grudges and when we do talk or meet up- you'd never know we hadn't seen each other in 10 years. When she and Tom were in town for a much too short weekend- it was wonderful but also felt like a big scab got ripped off. I got so busy in the day to day I forgot how much I liked them and missed them.  And in true friend fashion- I had brought her gifts from Europe. Tea, trinkets and truffle oil from Italy. Monica laughs and runs out to the car to retrieve her gift for me- truffle oil. That's just how it is.

Her girls came to visit this summer and would pop in and out like they used to. Except everyone is a lot taller. And has much bigger cup sizes. One morning I get the fateful call from Monica. Skippy- their beloved diabetic poodle died. Now, Skippy almost died about 8 times previously. I personally said goodbye to Skippy 3 times- tears and all. Phillip and Skippy often bonded over insulin shots and I swear that pup could sniff out cancer. Yet it is still not easy to say goodbye to a friend. "Should I tell the girls?" she asked. Um yeah. I am not a fan of postponing information like this- it just makes grief messier and gives people a piece of anger to fixate on. As a mom, I know she didn't want them to grieve and not be there in person, but grief and loss is hecka inconvenient like that. I won't tell my girls, so if her girls need to,  they can. I do tell Kiera and Phillip, they are older and need to process so they can support their friends.  It's part of grieving, the telling and the processing. I recognize this and teen girls, well they are teen girls. So I JOKINGLY say- just send some of his ashes here- we can sprinkle them in his favorite spots. You know- where he would shit in my yard.

I am all for memorials and closure, but Monica and I have different views on spreading of ashes. I feel they should be spread. She keeps them in a closet tucked between yards and bolts of craft fabric. In my world that is a spillage and vacuuming nightmare waiting to happen. I'm not entirely being an insensitive ass, I was mostly trying to make her laugh- I've spread some ashes in my day so I'm "allowed" to weigh in. I know everyone deals in their own time and timing and location has to be right. And sometimes you need a friend to help you with the hard stuff or to lighten up the moment. Or a friend to ship half of your beloved poodle's ashes to. Yeah I'm that friend. I am not the funny friend. Or the wild friend. I am the friend that can be trusted to dispose of ashes. Or bodies. Remember that. On second thought - don't-I'm kinda maxed out right now.

In walks Phil, a week or so later. Why are there packages to Alyssa from Monica on the kitchen table? Oh those are Skippy's ashes and some other items.

Lily- skippy DIED?

Tears. oh shit. Phillip- Skippy died? Well dammit- I KNOW I told the big kids. Kiera looks at me- I told him right- she nods- you totally told him. But the girls didn't tell Lily and Bella?  Kiera- guess not. Obviously. Outstanding.

Phil- please tell Monica that she has earned herself a ziplock full of ashes when you die.

See he's the funny one. God I love him.

Since the boxes are not addressed to me- I can't actually open them and dispose of, I mean scatter ashes. And I think Alyssa is avoiding it. So I might have to get all friend on her because the extended puppy wake has moved from the kitchen table to the hall table. At least the girls don't tear up anymore and say- oh skippy in that really sad voice.  And that's the thing about friends. I can call Monica ugly crying from a park bench around the corner because I don't want to have to explain to the kids for the 3rd time that morning that I'm ok, I'm just sad. Because they and I both know I am more than just sad and I don't have the energy to address it right then. Yet as they grow I hope they see and know that is why I am choosey about my friends and help them to be selective with theirs. We are kind to everyone and have tons of room for endless friendships, but in our lives the true friends will be tested over and over. And I hope they will have friends they can ugly cry with and be trusted with ashes.

Rarely are things black and white with scans. It's pretty subjective and it's own art form. 

Results for kiddos are in. I'm going to tinge this way over optimistic with a slight shadow of caution because that's just how I need it to be right now. 

Bella: Gets the prize for only kid with nothing weird commented on. Ironic, I know. For Mallory MRI bingo players at home- we count this as an all clear. Or unremarkable which is the only time Bella is encouraged to be unremarkable. 

Lily: Will have a follow up with ortho so they(the bone docs) can weigh in on the slightly growing(small) spot in her humerus. No one is concerned and everyone except me was content to wait and scan in 3 months. Fortunately we haven't been to orthopedics in a few years, so I cannot say how good they are and her oncologist is humering(pun-get it?) my concerns. I can be just about positive they have no knowledge of LFS. I do have a couple emails out to specialists for my own sanity. But hoping this is just a quasi normalish benign something or other we only see because we scan regularly and cautiously. The good news is nothing was concerning on Xray- but LFS cancers tend to be weird. It basically is for my sanity. I know we can't be sure without cutting into her- and I am not prepared to do that yet- but I would like more information. Everything else looks good. Thankfully. 

Kiera: Has a Baker's Cyst. Nothing to do with cakes at all. or baking. It's a little pouch of something or other behind the knee. She has no complaints- most likely something we wouldn't know about but because we scan, we do. So other than that- all other areas unremarkable. Again ironic- but what we shoot for. We love unremarkable scans. 

Phillip; Still has a stable arachnoid cyst- unchanged, not a problem. He does have a spot on his humerus head(aka shoulder joint) that was a little hyper intense. He is a pretty intense kid and tortures his shoulders a lot in workouts- He has a routine appointment for diabetes on August 1, so I will talk more in depth to the docs about it then. I do not think it will require follow up, if anything we may X-ray or check on it with MRI in less than a year to compare. All other areas- unremarkable. 

Now Me: The PET was good. PET/CT monitors for active metastasis in the body - and I got no progression/ stable.  It is good news. The brain MRI was not so reassuring. Hence- it was remarkable. and not in the good way.  There is some growth in boobie the cerebellar brain met. It is only a couple millimeters, so that is good if we are going with overly optimistic. We are- I told you that earlier. What we don't know is what kind of growth. It looks like radiation necrosis, which is when healthy tissue around the tumor(or tumor) dies. It can cause swelling-which there is and symptoms- which I thankfully haven't had.  The only way to know for sure is brain surgery and I have major PTSD about brain surgery. I also have an aversion to death so at some point we will have to make the call between a tumor and a tough place.  Needless to say I've been a little liberal with the anti anxiety meds this past week and taking lots of walks. And lots of tears. The kids know something is up and I reassure them this is just normal follow up with less than great news- because in mets world it is. It's not an emergency and the professionals are calm. Because they are professionals. I on the other hand have no license and can freak out as much as I damn want. Which I try not to but the freak outs seem to find their way out in the form of watery deluges of my eyeballs.  We did MRI spectroscopy on Tuesday- the idea is to try and get a chemical signature from the tumor area to see if we can get any more information. The best way to treat necrosis, progression, or new tumor(the 3 things it might be) are all surgery. The information from the MRI will maybe tell us if we can give steroids a shot to reduce inflammation, but the likely result will probably be surgery. Maybe not- I like to keep it weird but also real. I have NO idea about timeline so please don't ask. 

I have treatment next week- will check in with the docs then- right now just managing stress and the kiddos' last couple weeks of summer. Not one of them has yet to say they are bored, which was my only goal this summer.  Little shitheads can't even complain of boredom for their poor mother(sarcastic tone- I'm ok with this, we all need lots more down time). This will be a standard- wait and see and hope things don't get worse- situation. And during this time I keep busy and it's tough to be social. Sometimes all the normal things are a blatant reminder of how quickly this could all change and the independence I might lose. One of my biggest fears is being a burden. A simple thing like planning something in a few weeks instigates a panic attack. This is the journey, this is not new. And then I get mad at myself for any time wasted on stress, but sometimes the grief and fear seep in. I think it's best to try and deal with them in manageable bits instead of letting them fester. Hence the walking and meditating and when all else fails, meds.  It's one of those times I just batten down the hatches until we know more or need to do more and adjust my priorities and keep stress to a minimum. Hahahahah. Optimism. And along those lines- a friend posted this last week and it about sums it up. 

Ironically by- the dry ginger.