The Show Must Go On

One of the first, toughest lessons in loss is that life goes on.  The sooner you learn it, really the better it is. Because Life does and will go on around you, over you and eventually through you.

I see things around me daily that I can't understand, that I don't agree with, that bother me to no end. I want to fix it. I am a fixer. I just can't. It's infuriating. It may be because you can't fix stupid. You can not teach those who refuse to learn. It may be because I want something different. I do realize my way is not the only way and I know it's not always the best. When you have ticking time bombs inside your body- efficiency becomes a way of life, a necessity in order to pack in all that needs to be done. Inefficient, busy work is mind numbingly insane and altogether unacceptable.

The events of today are not the most important of these past couple weeks, but the are the most current and in that they are weighing heavily on my mind. I sit here at 2 am, so physically exhausted it hurts to move and yet I cannot sleep, I cannot calm my mind. I lay here on the couch- a purchase I am a million times grateful for as it is so comfortable and although I've had many sick nights here already- this is my first with Lily monkey.

This week was 'hell week'. The week before a production. Lily and Kiera are ensemble in a double feature, Sleeping Beauty and Cinderella. Hell week is aptly named as it is impossibly long hours and hard work physically and emotionally. I wish hell weeks were only the week before production, but hey you do what you gotta do to help your kids do what they love. Generally at some point during the week - usually every minute - you wonder what the hell you are doing it for and then the show goes on. Sometimes there are laughs, intentional or not- there are tears- intentional, or not and you learn the show does go on. You do what you gotta to because it will go on around you, sometimes plowing right over you.

After several late nights, Lily woke up with a sore throat and stuffed nose Friday. I kicked myself for not taking her home earlier every night that week. What works for others doesn't work for us. As much as I like to pretend otherwise. This is evidence. I kept her home from school. And I question the sanity of what we are doing. If physically we have what it takes. We rest. I snuggle with her on the couch. We watch Aladdin for the 8 millionth time, just like the so many other number of times I snuggled with her and we watched Prince Ali win the princess while she was in chemo.  Because Lily does not have an adrenal gland- these are precisely the situations we have to navigate carefully. We just had her stim test- so I know her adrenal gland- although working will not provide enough cortisol to keep her healthy when she is sick, or injured. Right now she is a little sick- so we do the best we can to control it.

I knew Saturday was going to be a long day. The girls had 2 performances. It was a long ass day under normal circumstances. There would be no way I could do it if it wasn't week 3 of chemo cycle and honestly I don't know what I will do next week. I just don't. SO I let them rest and I help with symptoms. Kiera now has a stuffed nose.  Phil keeps tabs on the boy who has a wrestling match or two today- I don't really know and I feel bad. Just add it to the list. Bella was going to hang with Phil but decides at the last minute to come with us to the performance. I boil water and put it in a hydroflask with 2 tea bags for the girls- we are running late and I grab the first lid I find. It's the sports lid- I tell both girls it's hot and it will be hot so be really careful when unscrewing the lid- don't use the pop up top. We are already late, but nothing I can do about it. I'm already tired. Bella says something in the car- it startles me- I forgot she was with us. It's a side effect of hell week. and life these days. I hate it, the being tired before I even start.

As we get out of the car I hear a blood curdling scream- I run around and Lily is just standing there and I see it- a splash on her tights- her hand is glistening. The tea. The god damn boiling tea. I throw my purse down- Unscrew my cup and grab ice cubes. She is just apologizing. Saying it hurts.  One of the sweet boys in the show comes out and asks me what can I do? I dump a ziplock of cold supplies and ask him to ask for ice at the concession stand. I hold my last melting cubes on Lily and we assess. Kiera is picking up pieces of all the belongings Lily and I seem to have scattered in our emergency. The boy returns with ice and we manage to get Lily situated backstage. The show must go on. I kinda wanted to take my show and go home. Lily's hand is burned but not blistering. A doctor drama mama checks her over and another mama coats her burn with lavender oil. Sometimes I forget in our new normal that her little body has been through hell. I forget. She forgets. We so just want the normal.

I head to my spot- I promised to help with tickets and I was already behind. As I get into the cafe, I realize there is a parent meeting in progress. It's for the parents working backstage- backstage is a whole lot of chaos- I just can't. I slither into a spot and begin tearing tickets. I kind of hear something about "for those of you who came late we talked about" .  I can't even. I just can't. I have a 10 year old with first degree burns and a cold. Kiera just wants to be seen and is testing negative behavior to see if it at least gets her seen. This is something I am very opposed to. I tell her to choose the high road. She has to figure this out.  Navigating the tricky waters of difficult personalities is a skill she will have to master on her own terms. All I can do is guide. And from time to time redirect.

Lily brought a sleeping bag and pillow and set herself up out of the way backstage. If there is such a thing. Fortunately for ensemble, she will have some down time. It is chaos, my back is spasming intermittently. Time flies. I kind of hold my breath as the first show starts. Kiera completely whiffs her first line- but she takes a breath, focuses and carries on. The show must go on. Lily is somewhat intelligible. As much as a partially deaf kid with 1st degree burns and clogged nasal passages can be.   I know the burns don't technically have anything to do with that, but I'm kinda fixating at the moment in my journey of self flogging. But we'll get to that.

So we make it through the first show. Which is really 2 mini shows. In between 2 showings of the double feature- yep that's 4 mini shows...the kids get pizza. I'm dealing with a prop crisis and the second set of tickets. Lily wants pasta. There isn't pasta. Carb craving is another sign- I gave her hydrocortisone Friday. I forgot today. I thought about it. But I got side tracked by symptom management- I forgot the basic. We don't always give her meds for colds but it was a big day- I figured she could use it. But I forgot.

So I tell her just eat the pizza- she was grumbly. I was short. She was hungry. That was a good sign. I always worry when Lily doesn't eat. The second set of shows start. I sit, my head is throbbing. I chug water, hoping its just dehydration. My back and neck ache. Its raining again, and chemo turned my otherwise young body into an achey barometer. Then intermission and  the last show- we are almost there-Lily missed her cue. She's not on stage. One of the moms comes from backstage and I know. I just know. What's wrong? She said she threw up a little. Fuck. I grab my bag and head back.  I see her curls- she is sitting there- even with full make up she's several shades of pekid. Come on babe- get out of costume- you are going home. I knew if I told you you'd take me home she says. I really want to perform. My heart breaks for her. I'm so fucking tired of sickness. And it's not even as bad as it's been or as it could be but sometimes I just feel surrounded and would like a break. I know others have it worse and I hope karma, the powers that be are tending to them and we will get our break but perhaps they need it more and I am grateful this is a normalish sick. I think. I hope. Only time will tell. I'm so glad one of the drama mamaz was nice enough to grab me a venti latte earlier- which normally having at 6 pm would be a bad idea- well tonight it's been my life raft.

In the car she sobs. My heart breaks. The tears fall. Mine. Hers. She is apologizing. I am apologizing. I tell her sometimes we get sick. It's nobody's fault and there will be more performances. It doesn't take the burn out of this though. I ask her to explain to me what happened- I'm triaging- do we need to go straight to shot or can we try oral meds at home. I really don't want to spend the night in the ER. But I really don't want a sick Lily either.  She explains that she really didn't feel well and she threw up a little and she told Kiera but she didn't want to tell me because she didn't want to have to go home and then she got sick again and it was a lot. But she really wanted to perform, She really didn't want to let  everyone down. And I had to explain to her how important it is for her to let us know when she is sick. It's not like other kids. Her little body needs extra help and we have to know.

And I am so mad at myself for letting her down. For letting a 10 year old be in an environment where she felt like there weren't options. And yet what does she know? She knows the show does go on. Life does go on. She just didn't want to miss it. We get home and I give her meds. I watch the clock- it has to stay down for an hour. It has to stay down for an hour. After an hour I sigh. I still won't get much sleep tonight but this is good. She goes to bed. Phil goes to bed. He's working tomorrow because Monday is chemo. There are never enough days. One of the drama mamaz offers to bring Kiera home. I am so grateful.  When she gets home, we talk about how the rest of the show went. We talk about what happened with Lily. I reminded her how important it is for us to know if Lily is sick because when she is sick or hurt we have to get her extra medicine. And then it hits me. Or hurt. Hurt. She burned her hand. God damn it. I missed it. Her poor little system had so many assaults and I should have given her medicine right then. How could I be so stupid. Damn. Kiera just says Oh mom, it's gonna be ok.  I know it's gonna be ok but I want it to be better.

I know that I am doing the best I can. I hate when it doesn't feel like enough. Parenting can be such a shit show. You never know what crisis will pop up, what will go wrong. But as I reminded Lily, there will be other shows. The show will go on. Life does go on. One of my favorite sayings is- everyone you meet is going through battles you know nothing about, be kind. always. I know that because often I am the person and I appreciate the kindness. I don't know what I would have done without the small kindnesses of the drama mamas.  As she snores quietly here next to me,  I think tomorrow is another chance to do better. And I realize tomorrow is today. Welcome to the show.

CARE vs CURE

Well when you ask if your brain MRI report is in and your nurse pulls up the chair- your heart stops a little.

There is a small growth in the tumor in my cerebellum. About 1mm in each direction. Before radiation, it measured 18x14 mm. It shrank, stayed stable, Now it's around 11x13mm. I'm used to dealing with tumors in the cm range so millimeters is new for me. But then again we are talking about my brain so the less we have taking up residence there- the better.

My nurse shrugged and said eh- it could be the difference in one slice. My friend pointed out that it could be that we used a different machine. Either way, my onc looked it over and will discuss it with the radiation oncologist to see if we want to re-blast it now or wait and see. Regardless, we are going to wait and see what my PET scan reveals in 2 weeks. That way if we have other stuff to deal with we can make a well rounded plan. Phil tells me to hurry up and take our chemo selfie before I forget. We smile, because this is what we do. We could cry. I know I feel like it a lot, but I am going to focus on the positive. It wasn't stable as hoped, but it could be worse. We follow closely so we can keep on top of it. We go by how I feel .

I have been feeling pretty good. I am still running the kids around like crazy- not taking enough down time and actually sleeping. Phil's work is stressful and it's already taking a physical toll on him. Not that having a wife with stage IV cancer, 4 mutant children -2 with managed health conditions and general life was enough to do that already. But we are living the dream. Ok that was only partially sarcastic.

The Pentatonix released a version of Shai's If I Ever Fall in Love. It is one of "our" songs. The summer I was in Honduras- it was a huge part of my soundtrack.  I have these moments a lot that so much remind me of another time. The girls in the van, singing along to one of our songs- harmonizing- is enough to send me to a simpler time- a time when I was 16 and fearless in a third world country in Central America.  6 weeks made a huge impact on who I am. It gave me an appreciation for another culture, simple living(which is HARD WORK), cement floors,  windows, running water, not having to catch your dinner. It also taught me that experience isn't always a matter of length of time- but quality of time. I learned that watching my brother fight cancer and I knew that- but the lesson was always in the cancer context.  Being able to take lessons and apply them in completely different situations- this is where I learned a lot about me and how to cope. I observe people and I feel their feelings. In another life I might have been a great writer- capturing these observations in a great patchwork of fictional characters to tell stories and teach morals.

I am in several support groups and was recently chewed out for "blowing sunshine up people's ass" and also reprimanded at the same time for not believing in a cancer "cure". This of you who know me know- I don't blow sunshine- I don't kiss ass- I tell it how it is. If it is sunshiney well that's because it's sunshine.  I know that anger is a real emotion and those of us living with chronic conditions have a lot of it. It can overtake you if you let it. Some days I have to remind myself that today I am still busy and get to hug my kids and be there to tell them to stop being assholes to each other. Because humans are messy and they have LOTS of emotions. They are not always rational or pretty. The happy, fight, we can do it cancer advertising doesn't sit well with me. It's not happy, it's not pretty, and we can't always DO it. You know this if you've ever lost someone. To cancer, to drugs, to mental illness, to disease, to life. When someone says "I wanted it bad enough and so I fought and now I am in remission- you can too" It's a slap in the face to those of us who have lost loved ones. It just is. I know my brother wanted to win and I KNOW he fought hard. He did everything the medical community recommended. He still died. In any world where children die of diseases that nothing can be "done" for- well I refuse to believe there is a cure. To me cure means- gone-eradicated- no threat of returning. But then I look back at how much has changed from then until now. There is the hope of CURE. But mostly there is better CARE.

Anyone who has had a disease that has been "cured" could tell you there is ALWAYS the nagging worry that it MIGHT come back. See- to me- CURE means there should be no worry. With cancer, there are no guarantees. Having LFS means even if you knock out one cancer- there is a higher chance you will get another cancer- so cure is even more elusive.  I hope it doesn't seem jaded, I do have hope. Because there are no guarantees- it also means you do not have to adhere to the path of poor prognosis. You can just ignore that and chart your own path.  I also wonder if my somewhat dismal attitude towards "cure" is also the reason I am on this path.  Every day I look at Lily and think- she is the statistical anomaly. She is not supposed to be here. The yin and yang of it also means that if she is here,then the universe seeks balance. Many of you know that is a bargain I made with God/The Devil/who ever was listening as I snuggled my sick 3 year old over 7 years ago and prayed that the cancer leave her little body- I would do anything, ANYTHING to take it from her. But I am no different than any other mom in that situation and I have no more or less desire or power over that outcome than anyone else does.   I mean realistically- I know I have LFS- it was only a matter of time- BUT your mind and heart play tricks on you when faced with the impossible. They try to align in a way that you see- anything IS possible. There is ALWAYs a chance, there is always hope. Everything does happen for a reason. And if that phrase does not sit well for you- it is because you are in that hard dark place right now where none of it makes any sense and there could never be a good reason for any of it. But the reason is YOU.

Keep up the good fight. Well I have realigned the way I view it- and I view it as a dance, not a fight. Fighting implies a win/lose situation. But there are options. A bargain. Because although I made an agreement- the terms were vague.  There is cancer in my body but I need it to behave- sometimes it will require chemo assistance- sometimes it will be dormant on it's own. I respect that it wants to survive- after all- I want the same thing. I have an unhealthy roommate that I can't kick to the curb- so I have to learn how to keep her sedated. I can live with her- it's not ideal- but it can be done. The difference between cure and care is just one letter.

Recharging Batteries

Growing up I remember being told do not sit and cry about it- get up and do something about it. With 3 girls- I've heard my mother's words leap from my mouth so many times I've lost track. And so many of these things were probably legitimately cry-worthy. Many were not.

Yesterday was rocky from the beginning. Kiera as part of the performance ensemble, participates in a traveling educational program funded by Kaiser Permanente to encourage healthy eating habits and exercise called the Amazing Food Detective. She loves it because she gets to act. The trade off is she has to miss school and we have to get her where she needs to be. It's not earth shatteringly complicated, but we do kinda have a routine down and when I am feeling crappy it is very difficult to be flexible. So at 10:15 the night before- still not having received the "show time" email- I made her go to bed and fell into bed myself. Phil had to be to work early so I knew we'd be up by 6 to check the email- but surely the report time couldn't be too early or they would notify us.

Phil got up and I rolled over- he kissed me- it was 6:10. Why does that always happen? On saturday mornings I am up at 5:30.  School mornings- just a few more minutes. Kiera is already up and brushing her hair. She looks forward to this. I go down and check my email- showtime is 6:20. I start laughing maniacally. maniacal laugh maniacal laugh. Of course. Even if we left the house right now- right freaking now it wouldn't happen. I send the director a text. Part of me wants to crawl back in bed- make Kiera snuggle up with me and watch tv all day. I need a mental health day.  She would never do it. I'm torn between trying to help her and stopping the madness. Phil looks at me and the concern is tangible. My stress level is rising and I feel physically ill. I will take her. He tells me. He doesn't have time, there's so much he needs to do- I didn't want this. I didn't want him to have to do this. Yet he does because it's important to me because it's important to her. But I am just too tired. Emotionally. Physically. They are out the door before I can summon the energy to intercept her. It doesn't matter, it's time to get the other girls up and ready for school.

I have several family members and friends going through some really tough times right now. Things that make me so unbearably sad at times I can barely breathe. All I can do is send love and let them know I am thinking of them. I feel like it's not enough.  Inefficiency and people not respecting and valuing time really get to me right now. I don't know if it's because of all the hard things swirling around me, experience or if my patience has just finally worn thin. The day goes on- I take a walk and visit with my nephews and their nana. I rest because the girls have a later rehearsal and I already feel worn down. I spend an hour assembling a lasagna then we end up grabbing happy meals because I didn't have enough time to heat it up. It's silly, I know. But I am tired. You never make good decisions when you are tired. Or sad. Or stressed.

I drop the girls off at rehearsal and take Bella to the park. She plays and I walk back and forth until my joints argue that it's time to stop. We sit in the car and read. And nap. At 8:35 pm, I get out of the car to go get the girls and one of the other kids informs me that they are just finishing up and will be out shortly. I get back in the car, it does not start. I try again. nothing. I remember the back light was left on the other day. Ohhhh nooo. no. One by one the cars around me leave. I don't have the energy to smile, wave or call for help. The car battery is not the only one that's run down. My internal battery is dwindling. I call Phil.  He asks some insanely easy questions. Like is it in park? I may have tumors in my brain but I haven't completely lost my mind. Did you press on the brake? Oh- well shit why didn't I think of that- Kiera was currently on the floor peering into the fuse box to try and tell me if there was anything amiss- yes i fucking tried the brake. never mind, I hung up. I watched the last of the cars around us leave. Except one van which I think someone might be living in. I'm not sure. This is the perfect Halloweeny serial killer set up. I sit there and tears are just streaming down my face. I don't even want to move. I've heard of this phenomenon. People just shutting down. The girls are quiet. The sense the cracks forming in the facade of mom. I know sitting there and doing nothing will not help but I think my battery might just be depleted. I know how the car feels. I'm relating to a vehicle. This can't be good. Whenever did sitting there and crying about it solve anything. I just can't get it to stop. I can't get the car to go. I just feel so invisible. So ineffective. It's not a wrenching sobbing thing but my eyes are leaking and they won't stop.

Lily is jumping up and down waving. Phil is here. My knight in shining CU armor. He pulls next to us the kids are all gathered around learning how to jump start the new car. He looks at me and notices the tears- it's really not a big deal buddy- he tells me. And I know that but I can't turn it off. I just can't. The tears won't stop. It's not the car, or fatigue or any one thing. It's the collection of hard things swirling around and I just can't. Not tonight. Tonight is done. Tomorrow will be a new day. A new start and hopefully my battery will recharge. But not tonight. Tonight the tears just flow. For the family who are struggling with this god damn disease, for the friends who are fighting for themselves and their children, their parents. For the loss of the ability to plan and supreme frustration with others who refuse to when it is so easily at their disposal. For the loss of independence by way of exhaustion.

The car stalls again. We finally get on our way. He's running low on gas so Phil heads to the gas station. Kiera's hand is on my arm. I hope they understand someday it wasn't about the damn car. I am perfectly capable of dealing with a lot but somehow in that moment I was tired and didn't want to and watching the cars one by one around me drive away to their lives, their dinners, their futures was the loneliest feeling in the world. So it's times like these that I don't usually share. They happen. They aren't my favorite times but they are important. I wasn't alone. I was never alone. It just felt like it. Now to focus on recharging the batteries.

Days 20 and 21. Cut to the end.

The last few days of a cycle, I feel pretty good. Its a mad rush to do all the things that I want/need to do. Sometimes it's just cooking a dinner that's not hamburgers or pizza. Sometimes it's prep for the next week. Sometimes it's sitting on the couch watching football while my husband folds laundry. And now it's been a full week into the next cycle and I don't really even remember what happened day 20 and 21. It's kind of Groundhog day. Usually I get some intense anxiety and sadness going into the cycle. Dreading feeling icky. But then I remember why we are doing it and I keep busy.

Bella helped me put out Halloween decorations.  Oh the girls had rehearsal and we went out for an appetizer dinner after. Phil was overnight shift again and that seemed like a fun dinner diversion.

Monday, Lily and I got our hair cut! That was the big thing we did. Not that big but important. My hair is awesome. I think back to all the years I wanted curls so badly and paid to have one disastrous perm after another. When Lily's hair got crazy curly, I always kind of felt that in a way- I got my curls. But now I have my own and they are pretty crazy. And I don't care if they don't lay right or I have a frolicious day. I throw some mousse in it- scrunch and away we go. Getting a haircut was tougher than I thought.

My barber is great. He gets that I'm a no fuss kinda girl. So I was surprised how painful the "are we growing it out or cutting it today?" was.  It felt too much like PLANNING. It shouldn't be hard- I'd LIKE to grow it out, BUT I don't know how long I will have hair until we might have to take another chemo detour. So do I want to spend time in that "awkward growing it out " phase or just keep it kind of easy and short? The cool thing is I am at that point. I'm where it's a little long to be tamed but too short to be pushed pulled or pinned back cohesively. But I also am no fuss no muss. But it would be nice to grow it out and pull it back again. And well I have a Lily- people seem to like to goofy curls. I know I appreciate them.

We compromise on a bit off the back and a general shaping with the plan to let it grow out and if it gets annoying, I can always make another appointment. After that we met the in laws for lunch. I like random opportunities to take cute pics of the kids.

Day 19 of 22. Show-ing off.

This is one of those days where I spend time blogging and it disappears and I want to scream because I don't have time for this....

Saturday- The big show. Sleeping Beauty. I didn't have high expectations- after all it was a traveling week long camp done in 4 days. But I was really pleasantly surprised. The girls had fun and would do it again - so that tells me everything I need to know!  The Memorial Theatre is old, but keep up pretty well with real seats and air conditioning! 

Kiera- Fairy Godmother

Bella- Musician

Lily- Cook

 We are so lucky that we had some good support in the audience- aunt, uncle, cousins, grandma, grandpa and even some of our Raptor Ohana.

After the show we went over to lunch by the water. 

Phil, Phillip and Lily took grandma and grandpa for a tour of the squadron and to the UH football game. The girls had some self directed quiet time. You know its been a busy week when....

Bella went to play with her cousins, Kiera and I went to see her friends in the Tempest. A tough show- but the kids did great. Half way through Kiera leans over- do you understand a word of what they are saying? I laugh- not so much- and I even studied this in college. But it was really well done! and then we fell into bed....

Days 17 and 18. of 21. Groundhog Days.

These are the days it hits me. The I feel pretty good days that signal it's almost time to do another round. Fall break got busier than planned for me not planning anything. I think I've spent more time on base in the past 5 days than I have in the past 5 years. Each day thinking- I'll do this and that and such and then the day just kinda disappears. Running errands, stealing Phil for lunch.

Wednesday night it caught up to me. The running around like a normal Jen. By the time we were due at soccer I was tired. Like hit a wall tired. Phil and I got home about the same time and we threw together pasta for dinner. By the time we were done eating, my stomach was rebelling. I think about everything I ate wondering if it was something but really nothing major. I think it was my body just saying enough is enough.

Thursday I dropped the girls off at rehearsal and then just made some calls. I notice that Lily has a doctor's appointment tomorrow. I call our end nurse to see if we can switch hers and Phillip's appointments. She doesn't see the appointments in the system at all. We figure it out- put Phillip in the morning and I tell her I'll call to reschedule Lily. Phil had some time between meetings so I wandered over to the squadron to grab him for lunch. We sat at the golf course and watched planes taking off. Even though it's been busy- I like that I get to see him during the day before we both get too tired.

We discuss the next day. Somehow I need to get Phillip to a 9 O'clock, 2 hour appointment and the girls to rehearsal by 10. Well he is 16 now. He has an ID. I decide that I can drop him off, he can get checked in- I'll drop the girls off then go back and be there for the second half of the appointment. It will have to do. Phil offers to go pick Phillip up- which doesn't make sense since- once I drop the girls off I can go- the biggest thing is I had to cancel a coffee date. But I know how hard it is for him to break away from work now.

I get up early Friday and am texting with a friend who asks- wanna Skype? Her son has been battling cancer for years and the latest run has been throwing roadblock after roadblock in front of them. I wander downstairs and fire up the Skype- we chat, sometimes through tears, she gets her laundry folded- I'm directing children in this well thought out morning plan. I hate to hang up, but am glad we had a little while to chat.

I rally the children. We drop Phillip off at Tripler- traffic was again in our favor- gotta love break- I throw some cash to him and tell him to grab some breakfast before he checks in. We are on the way to base when the girls realize they forgot bags to put back stage. Phillip texts me that they don't have an appointment for him but they will squeeze him in at 10. Of course- that actually works better for me- but i feel like I am running around in circles. I tell him to get a bigger breakfast and I'll meet him by 10.

We stop and grab 3 bags, I drop the girls off- they are early so I wait a few minutes until a responsible adult arrives then I head back to Tripler. This is feeling like Groundhog day. I sit and wait with Phillip, we are called back shortly. The valet said they are closing at noon- but if I wanted I could just pick up the keys by then. I wonder if we will be out of the appointment in time- even though she is squeezing Phillip in, his doc is thorough. She is being shadowed by a resident and I debate if I want to knock off some general healthcare tasks or enlighten him on LFS. I decide to multi task- I mention Phillip has a plantar's wart that needs taken care of- would it be too much trouble while we are here? Not at all- does he need a flu shot too? Phillip starts to protest- I just had a shot. Yep different vaccine bud. No but I just had a flu shot last year- his eyes are twinkling. He knows they are an annual deal for him. Oh yes- that would be great. What about labs- yeah we probably need labs. When all is said and done he was jabbed 3 times and frozen with liquid nitrogen. His A1C is up- it's kinda a big picture of what his blood sugars have been doing. This means we have to play with his pump settings and insulin ratios a bit. Not a huge deal. Plus he's back in wrestling- it was bound to happen.

It's a bit after 11:30 when we finish- pretty efficient. We stop by the pharmacy and grab his insulin. We then go to Oncology to do my bloodwork. Hopefully this will save me a couple hours on Tuesday.  Oh yeah- Monday is a holiday- so we get an extra day. So I guess this cycle has 22 days. The receptionist says they are full to have a seat. I hand Phillip the parking stub and tip- tell him to go retrieve the keys then stop by the lab and get his blood drawn. He nods and ambles off. They call me right away and I get vitals done and head back to the chemo bay. Friday is a different crowd- I don't recognize anyone. I sit and wait for my turn. Phillip arrives just as Cindy is accessing my port- I don't think it makes him queasy but it bothers him- I can just feel it. We talk about lunch options.

The plan was to head to the NEX and get lunch, him a haircut and shop a bit. It's almost noon. I'm tired, he is a bit restless. He asks if we can just do panda express. Sure. After 3 pokes and a wart freezing- he can have whatever he wants. You don't want to go to the NEx do you? He shakes his head. Ok- you want me just to take you home. He nods- if it isn't too much trouble. It occurred to me that Kiera has AFD(Amazing Food Detective- it's a healthy eating, exercise platform for Kaiser- they tour around doing shows at schools) rehearsal at 3, he has wrestling at 3- one of them would be late. It makes sense to take him home-even if it is an extra trip- it alleviates some stress. I am starving- I forgot breakfast in the rush. I have that- I spend my morning at tripler and running around headache. He offers to drive so I can eat. Oh why not. It's pretty much bumper to bumper traffic anyhow.

We get home, I lay on the couch for 10 minutes, pour myself a coffee and head back out the door. Groundhog day. I get the girls, drop Kiera off get home and Lily and Bella are at each other. Lily seems more tired so I send Bella over to her aunt's house. Lily throws a fit. A preteen- I hate you why do you hate me so much kind of yelling fit. It's all I can do not to strangle her or roll my eyes. Leave the drama on the stage princess. She stomps upstairs and slams the door. Normally I would correct this behavior but I am just too tired. I lay down on the couch and stare at the back of my eyelids. I hear her ranting and ranting upstairs. It gets quiet- I open my eyes and she is trying to sneak out the door. Nice try - go back upstairs. More stomping, more yelling, more slamming.  The next thing I know I hear the phone. Shit- I fell asleep- 7 missed texts, 5 missed calls 2 messages. It's only been like 20 minutes! Kiera is done early. I go upstairs, Lily fell asleep. I wake her carefully- and tell her she can go to her cousins now. Ok, she hugs me and skips out the door.

She spends the rest of the night giving me hugs. I grab Kiera who has plans to go to a haunted plantation with her friends. Not thanks- I say- life is scary enough on its own. Plus Phil texts me that he found a treat my friend recommended.

Day 16 of 21. Playing Around.

Last week my sister in law sent me a link to a theater camp this week on base. It's a traveling Children's Theatre Company from Missoula. They are doing Sleeping Beauty.  We don't really have any major commitments this week- I was going to schedule haircuts and dental cleanings- but held off to see how this played out.

I look online and there is good info on how the audition works, what to expect, and roughly the time frame. They travel around to different bases, doing these workshops for free for military kiddos. It's a great program, they have their routine down. It also seems to keep our afternoons free for already scheduled activities. Compact and efficient- this is how we roll. Ha. Not usually but it's what we strive for!

This weekend though- I finally get the call from physical therapy- my referral is in and I can start back therapizing. I normally do Tuesday mornings- but auditions are at 10- Phil overhears and points to the schedule- he is overnight alert Tuesday- he offers to take the girls. This is big- because he has sworn off all things drama related. But then I realize he is counting on going into work while they are auditioning, it will be interesting to see if it works out.

I finish therapy at the time the auditions start and text Phil to see how it looks and if he want me to relieve him. He simply texts yes. Ugh- he has to go into work. I head to base. The kids are just finishing counting off as I get there. 104 kids for less than 50 spots. There are gonna be quite a few disappointed kiddos. I'm not sure where mine will fall. I'm actually pretty impressed with all the kids- military kids are used to being uprooted and introducing themselves, reinventing themselves at times. McGuyvering through all kinds of new cities, schools, cultures. It shows.  Even some of the tiny ones have these big booming voices.

I'm nervous for the girls. Hopeful for the opportunity. Lily gets singled out and moves lines. I think that's a good sign. I just don't know.  I'm worried Bella won't make it and I'm already planning activities we can do while the other girls are in rehearsal. And then I get mad at myself for being a crazy drama mama. Lily heads down the aisle. She is on her way to the bathroom and I keep myself firmly planted in my seat. The urge to go and chat with her is strong but I resist. I'm gonna let them be them. If nothing else- this already is a good experience. The directors are encouraging and really explaining to the kids what they want. It is very straightforward. I like straightforward. There are a lot of politics everywhere. It gets old- these guys are here to bring theatre to kids and you can tell they enjoy what they do. I'm sure a week in Hawaii has it's perks too!

They are running the 3rd and fourth round of lines. Kiera gets moved. I think that is good. I have no idea. We are new to this. They do round and round and round of row row row your boat- I told the girls there probably wouldn't be singing- I know I'll hear about this. Lily gets picked with another girl to sing together, alone. They get moved back a line.  I have no idea what this means. I can't believe people do this for a living- the stress alone- aaaaagh.  They are back in Kiera's lines- running lines and ask them to sing the word sing. All the girls pick high notes. Kiera has a bit of a deeper voice- she doesn't go high but she uses vibrato. Right there. All those voice lessons- she just pulled out a tool to set herself apart- even if she doesn't get a role- I'm proud that she stuck to her and didn't try to do what they all did. Bella asks to go to the bathroom. She waves at me as she skips by. When she returns they have shuffled the lines again and her spot is gone- I'm pretty sure the director just sits her down where she asked him. . We can go to the BX and maybe the commissary. We could even head over to the NEX.

It is so hard when people make plans around us and we are still week to week. It's hard when there is the clock- constantly ticking in your subconscious. We are Constantly triaging and prioritizing and finding a way and letting things go and letting normal go and realizing there are so many roles you will just never fit in because of the cards you are dealt. Committing to a production that might run in 3 months is a stress- the planning. I can totally handle this,  a one week chunk. It's not even a full week.

They send the kids offstage and it's about the time they said they'd be wrapping up. Sticking to schedule? This is new and different. You can already spot THOSE parents- sneaking closer with their iPhones ready to film every second.  I'm in the last row hoping my heart doesn't pound out of my chest and there aren't tears to deal with. It's a drama camp for the love of all that is good.

The first group is called up- it's the tiny kids. So cute. They move on to the next age group. The call Lily- she's a cook. One down. Oh that probably means Bella didn't make it. We could go to the park, or watch the jets take off. Wait did they just call Bella? They called Bella. She's a musician! She's beaming- she didn't think she made it either. Then they are on to the next group. They call Kiera- she's a fairy godmother. They call up the leads and there is much crying in the audience.  So many little kids. The directors encourage them all to continue to audition. Parents are already buzzing- there aren't enough roles, there are too many roles, some are following their children around in video mode. We have 20 minutes before Kiera needs to be back for rehearsal- I also have to rearrange my board meeting which I will no longer be available for. We grab Kiera a burger and call Phil to see if he can break away for lunch- he cannot- but we can join him for lunch. Some days that's a huge win! So we go grab burritos and hang out with him for lunch. It was one of those exhausting days that totally didn't go as planned but turned out ok. It could have gone either way. I'm grateful things kinda sorta fell into place today.

Day 15 of 21. Pieces of Paradise.

We live in paradise. Although the definition of paradise in our house changes rapidly. Paradise is clean scans, a snuggle on the couch, a warm breeze, a good night's sleep. The weather this year has been really strange. It is also weird for me to think that we've lived here for a decade. This year I'll be here as long as I lived in Colorado and Ohio. Each one of these places holds a special piece of home.

One of the good things about drill weekend is the off Monday after it. Especially when it's not a chemo Monday! We just laid there in bed as the sun came up. A piece of paradise- the sun beams in through the window in our bathroom- the color is so warm and happy- it is sunshine.

What do you want to do today Ferb?

Would you be up to going to the beach? Phil asks. Do you think the girls would want to surf?

Beach days are usually reserved for social functions and guests- it feels utterly luxurious to consider it when the honey-do list is so long. But as last night reminded me- sometimes you gotta just have fun. Let's do it.

Getting ready for and cleaning up from the beach is usually my biggest deterrent. Especially after spending the previous day cleaning- but that is just the thing- there is a lot of sand in paradise. I slather the girls in thick sunscreen- I've decided the spray on kind are just crap. Convenient yes, but between breathing in the toxic chemicals and the less than stellar coverage(you still have to rub to get it even) and the fact that one can lasts about 1 trip to the beach in our family- I'm over it. We all look rather aboriginal.

It's a beautiful morning. Fluffy clouds. Some rain clouds hanging on the horizon. A pretty decent break. I don't surf. It's one of those things that doesn't appeal to me. I love that the girls give it a go.  They jump right in the water and are playing in the waves- great body surfing waves and they are tumbling around like clothes in the washer- somehow finding that feeling to be enjoyable. I miss the flexibility and rubberiness of youth. I am happy though to sit there and vicariously laugh through them. It is a wave of paradise.

Day 14 of 21. Date Night.

Family cleaning day. It's what we do on drill weekends if there is time. I bribe my kids to get them to clean. I know, I know, you need to get them used to chores and what not as it is a part of life- and they do chores. More often than not they suck at it. Then I have to go back and redo it. Which sometimes is more work than doing it in the first place. But this is one of the things I am working on. The goal was to get the downstairs clean. 

I create a post-it with each kid's name on it and they each get to pick one aspect of cleaning they are willing to do. The rest of the chores are assigned. Bella is pretty much half-assing her way through. Lily usually sighs repeatedly and very dramatically but I whispered to her there might be Starbucks in it for her if she doesn't give me grief. I explain to Phillip for the 300th time, the appropriate way to clean a bathroom and that yes bleach will ruin clothes. I had preemptively sprayed all surfaces with bleach to ensure disinfection. Yet the bleach dried by the time he got there- so I grab a bottle and spray again- and I realize the smell is off. Oh hell- it's the ammonia based cleaner. How'd that get in there? I explained to Phillip- who has a keen interest in science- why we don't mix bleach and ammonia. He automatically asks about the pee in the toilet- you know because pee has ammonia in it.  Flush the toilet. But what about on the rim? AIM BETTER! 

I reward the good little cleaners(not Bella) with overpriced coffee beverages which is supposed to help with their productivity. Apparently it makes them wrestle in the backyard. So I tell them to clear off all the patio furniture and clean the lanai. Kiera and I are relocating items to the garage when it occurs to me my car hasn't been washed since Phil's new job took effect. Kiera looks at me- You want me to help wash the car? Can I pull it out of the garage.?Unlike her brother- this one is interested in driving. Phil at one point during the 7th grade told her if she got straight A's in high school he'd buy her a punch buggy. (VW beetle) She has the mint green color picked out and everything. 

The car was gross. Like really gross. I made Bella wipe everything down- and then have Kiera wipe it down. I keep an eye on the clock knowing the girls have drama rehearsal at 3. We get the car done just in time to grab a snack and head out. After I drop them off, I take inventory of all my achey body parts. It is most of them. I'm tired. I know Phil will be tired from working all weekend, but this is one of those times I think it's important to work at relationships. And by that I mean get away from the kids. I send Phil a text that we are going out to dinner just us. No kids. Cuz I am not cooking. I have enough time to shower when I get home and go back and get the girls. No one notices that I'm showered. Usually they immediately want to know where I'm going if I bother to shower. 

I throw some mac and cheese on the stove and they are doing the happy dance. They love mac n cheese. I really should make it more although I question whether or not it is even food. It is convenient. No one is on to me yet. As Phil walks in, Lily looks at me, not eating and dressed and says- wait a minute- are you going out? Yes yes we are. 

We talked and talked and it wasn't interrupted by singing or farting or arguing over who is better at whatever. I wish date night was physically possible more often, it reminded me why date night outside of chemo dates are important. Sometimes we make dinner and don't call the kids until we finish eating. But we feel guilty because we don't get that many everyone around the table meals either. sometimes in the day to day running around and stress and chaos I forget for a minute how much I like the guy I married. I get upset because I miss him and I see how hard he works and sometimes it really affects my mood. It's a different kind of busy than the newly married, learning your way around life busy. It's a different kind of busy than new baby or toddler busy. I schedule appointments to keep healthy. I keep the kids healthy. Sometimes you gotta keep your heart healthy too. I don't know if we'll be able to squeeze more date nights in, but I hope we can try!

Day 13 of 21. Snacks.

Last night we went to the Kroctoberfest. Octoberfest at the Kroc center- local community center.  Well Phil was detained at work and Lil Phillip hurt his back wrestling all 3 sisters at once on the stairs- so he decided to sit out the festivities.

I knew from the parking situation that the island effect would dominate this event. There aren't a lot of activities and if the word "free" is anywhere on the advertisement whether or not it is directly next to the word food- Hawaiians will be there.

As we got out of the car, we noticed movement along the curb. There was a mass exodus of caterpillars. It was a very strange sight. Big ones, little ones, green ones, brown ones, fuzzy ones, ones with the weird stubby legs. The girls were fascinated until they realized all the dots on the road were little caterpillars who didn't make it. The security guard actually laughed as he ran over them and they collectively gasped in horror.

We get inside the festival and make a bee line for the petting zoo. As we wait in line, I study the map and offerings. It's your usual fare- bouncy houses, carnival games- not the fancy kind- the toss a ball into a hula hoop kind. There is a bizarre pvc cage game that the line isn't to bad for. We will head there next. The petting zoo- although nice is a bit of a tease. There are about 3 dozen chicks and one girl who tells each kid- you can only pet them with one finger. One finger. I wish Phil was here. The jokes are bouncing around in my head.  My SIL arrives with her boys- I feel like a Debbie Downer because my sensibilities are offended by extensive lines for silly carnival games and the sheer number of people here. The cancer clock is ticking in my head- is this how you want to spend your time. It's such a fracking nag- but always there. You could be doing this- you should be doing that. Then I try to lighten the heck up and realize that I am spending time with the girls and that counts. 

I forgot that Bella will wait her butt in line for days if she wants something. One trip to Disney, the line to see Rapunzel was insane- but she was determined. The other kids went and rode rides and we waited and waited and waited. And how her little face lit up when she saw Rapunzel- well it was worth it. When Bell says she needs to go spin the wheel- I look at the line and say- really? Yep. SO we wait and we wait. I have her read the items on the wheel. Things like cookies, slushies, free guest pass. As we wait in line they announce they are officially out of food except kettle corn. It's 7 pm- I don't know what that means- and we are waiting in line to spin for something to wait in line to get the something (mostly food items)you just spun for. This could end poorly for us. 

We are one away from spinning when Lily and the others join us. Bella spins. She gets another spin. She spins again. It lands on free guest pass- he hands over the pass- It feels like a major victory. I let Lily take my spin. She also gets a free guest pass- I don't have to wait in line for food that is gone. I drag them home, after all we have an early soccer game in the morning and I am responsible for snacks. 

Somewhere over the past 11 years of parenting kids' sports- I've become really jaded about the blasted snacks. I am so over potluck, I.Can't . Even. So for an hour game- does a kid need a full brown bag lunch afterwards? Last week no one signed up. I in a fit of delirium mentioned to one mom I might try to bring. Well as usual- life got away from me. I sat down Friday night and decided I was not going to make myself insane- I had nothing around the house to even throw together- which says a lot because only 5 kids show up for the game. So I go online and sign up for the following week's game. Hoping others would see that and understand. In all fairness the game was an 11 o clock game- meaning we'd be done at noon- which is lunchtime- I'm not providing lunch for the team. Another team who is fundraising to go to Florida was selling musubis so one of the other parents bought one for each kid. It worked out. I felt judged. The team mom came over to talk to me. I threw down the cancer card. Sometimes you just have to. I sit in practice listening to how busy everyone is with their 2nd and 3rd kids and trying to get everybody to their activities. It's a full time job and they have to rely very much on their husbands to help transport kids.   I didn't bring snacks because I didn't make it to the store because I chose to nap so I 'd have enough energy to run my kids to their after school activities and feign this normal existence. I'm succeeding because unlike last time Bella played - I am not bald forcing people to actively ignore that something big is going on in our lives. And guess what? Last week everyone busted butt after the game because no one wanted to stay and help ref. Who reffed? Kiera. The team mom was awesome and supportive. 

So this week they got an orange and a granola bar and a gatorade. And I'm still not one of the cool moms and well that's ok. Bella won't remember what we brought for snack- she will remember that I was there.