Bitter Cold

Shortly before Christmas, the funk came to Hawaii. The only kind of cold we get here- cold viruses. You'll remember Lily and the burn/puking episode? Lily and Bella like to puke as colds come on. I think it's because they sniffle and who's stomach likes that junk inside? Yuck. Well Phillip has perpetual sniffles- which we have come to realize is part and parcel of wrestling. I really try not to think about the mats and dirty bodies and MRSA- we just shoo him into the shower as fast as humanly possible. Then Kiera gets it. Kiera rarely gets sick- so we are going to blame it on the crazy flora and fauna of high school. She has a hand washing issue- meaning OCD- lots and lots of hand washing. She scrubs in before she preps food or eats. It's one of those habits I can't really discourage. But we do talk about the feelings behind it-part worrying she will get me sick- or others who are immunocompromised and part just really not liking germs. Right around Christmas Phil got it. That left me and Bella.

Running ragged around Christmas is normal. I knew it was a matter of time. Then of course we make it through break and a full week of back to school(thankfully- it was a chemo week and I was hit particularly hard this go around with side effects- nothing unbearable-but lay in bed and hope it gets better kinda thing.) Lily wakes me up around midnight and tells me Bella is going to be sick. I get Bella and emphasize that she is old enough to find her way to the bathroom if she is going to be sick. Bella is a pretty bad puker- you could be holding a bucket up to her mouth and she's find a way around it. I "got spoiled" with Lily and chemo- talk about a crash course in puking etiquette. The other girls- fortunately don't puke much but when they do- they like to make a production of it.

I go to bleach down the toilet- as I do with any impending puke sesh. Nothing like hovering over a filthy toilet to speed things along or compound matters. The toilet is clogged. Um- yeah Lily tells me- it's been like that. Bella is a funny shade of green. I grab the emesis basis we keep stock of and sit her on the floor- make it IN the bucket - and tend to the clog. With a colorful flora of words just escaping from my mouth. I'm tired of cancer and being sick and sickness and sickness all around me and not enough energy to do a damn thing about it. Phil is so exhausted from his ridiculously ridiculous work schedule, his snoring pattern hasn't changed despite the flurry of activity less than 15 feet from him. Which only intensifies my anger. Which immediately triggers the remnants of Catholic Guilt.  Help! Help. Sure Jen accept help. Be better at accepting help. Unfortunately, I have done this living with cancer a few times- the living with grief thing- the life thing, to know that people get tired of your loss, your sickness, your grief. Everything gets back to normal and you have to settle back in. Everyone has their battles. You are not special. And some need to feel more special during it than others. You see celebrities day in and day out with cancer, dying of cancer, with illness- doing it on their terms, doing it gracefully- doing it quietly because the only thing worse than pity sometimes is when people get tired of your pain or that they might see and feel your pain. For every one celebrity there are thousands without millions of followers and well wishers, just trying to get through. Gracefully. Anonymously.  Watching the world go on around you. Watching the parties and the celebrations. Feeling like they are buried in sickness. In that moment I felt buried in sickness.

I realize I am falling down tired tired and on this bizarre sick night autopilot and I am unfortunately ranting. Out. Loud.  After my tantrum flushes away the negative feelings- its time to put on the big girl panties and do my job. Bella is mid puke and there are splashes on the carpet and the wall. Really kid?  Lily interjects- she did get it in the bucket- it just splashed out. And I see she is trying to help and in her 10 year old way observing me and I was just a horrible horrible example. It was not the wake up call I needed. But it was real.  I don't want to be the bitter mean person. It's hard not to let that gut reaction take over.  I get Bella cleaned up and tackle the carpet and wall. Sometimes people crack.

I explain that I was just really tired and that I am not mad at them- just that sometimes I get tired of sickness. It's not their fault, people get sick and then you just have to deal with it. Nobody wants to be sick.  It's your body's way of getting your attention.  I tell them tomorrow- we are all going to lay on the couch and just rest. And we did. I washed my hands- a lot. I sanitized common surfaces.

I get Bella back to school the next day- no fever, no puking- just the stupid cough that everyone else has had for a month. I am so over the hacking. I feed them mucinex like tic tacs and worry its something more. I worry that I will get it. I worry that I won't get it- because lord knows my immune system is not top notch right now- it's a weird feeling to think not getting sick would be an indication of something not good. And then I spend an entire day doubled over with nausea. And then my head starts pounding.  I try not to feel bitter. I try not to feel entitled. But every now and again enough is a flipping enough. SO I take a day and I go sit at the beach. I watch the waves and remind myself that as they beat against the rocks- the rocks get worn into sand. The sand ebbs and flows with the waves. Changes with the environment as the environment changes it. That night the coughing starts.

I've been really really down lately. Overwhelmed. It's not about having someone fix it for me- its not about business as usual or this is life. Somehow we did a complete 180 and are where we were before cancer and the problem is I have cancer. Phil's work is so obnoxious I can't even. Yet that same work provides me with the healthcare that keeps me alive. SO we adjust to the pounding of the waves. I triage activities left and right. Unable to spare the time or energy and when you do that - you lose friends. It just happens. It makes me sad.  And then someone will check in on me. And I am reminded that I have lots of friends and lots of people who care.  Some of those people are little and live in my house. Kiera goes out of her way to hang with me. I'm not the sort of person who thinks parents and non adult kids should be friends- but I like her. I really like her. Except for about a week out of the month. And then all bets are off. Although they drive me crazy with their age appropriate nonsense- I like my kids. Despite all that we have going on- we are doing ok. And just like a cold reminds you to take better care of yourself- sometimes sadness reminds you to take better care of your heart. And sometimes your partner in crime wraps themselves around you because they see the cracks and they are currently holding so many cracked surfaces together they missed the beginning of this- but you- you are their priority in that minute. For those lonely dark hours they even if in their sleep know that you need them to hold the pieces together and they do. And you are so unbelievably grateful you wouldn't trade that for any of the notoriety, riches and in those times there is no bitter cold.

Putting Away Christmas .

I just put Christmas away. Usually by Jan 1, I am ready, ready to free up space and declutter and putting away the Christmas decorations creates that illusion in our small space. Last year Phil put away most of the decorations, I struggled with vertigo. As I went through this year- I noticed things not stored the way I would have or in the order I would have. Yet the decorations were fine. The memories were preserved. The biggest "crisis" came in the form of a singular red ornament I noticed on the tree.

A couple years ago, my mom gave me the last remaining ornament from our original batch as a family. A red glass ornament. It was packaged carefully in tissue paper in a very special decorative box. The ornament didn't get put on the tree. It sat on my desk with a picture of our family by the tree at my grandma's,  the last Christmas before the Connolly side was ravaged by cancers. Last year a pewter ornament with my grandma's picture, rounded out the display. As I work, I can sit back and they look down and remind me what I am fighting for.

This year, the kids did great with the tree. Our new couch freed up enough space for it to be in the living room. I was so excited to be able to lay on the couch each night with Phil and have the tree there. Kiera took special pride in passing along how the ornaments needed to be balanced and carefully shifting them. Bella danced around with the tree skirt on as an actual skirt. Usual tradition is that they hang ornaments, we reminisce where each on came from and then when they get bored with the tree- or in the next couple of days- I put on the finishing touches. Beads, ribbons, ornaments that unify the eclectic conglomeration of memories dangling from branches. I admire decorated trees, unique themes and matching everything- but I adore our mishmash of ornaments. It is us.

Each year we consult the historical documents(last years christmas photos) to determine whose turn it is to hang the topper. The choice of topper determines the tree's theme- we have a snowman which usually goes with blue ribbons and silver snowflakes. We have an angel that usually goes with creme and gold accents. Phillip has been asking for a star for years and I found one this year that matched some gold ribbon I found last year. The lights were white, which created a problems- there are strict tree rules- Phil likes multicolor lights on the tree. Since he has very little say otherwise- I don't mess with that. The historical documents showed that it was Kiera's turn to hang the topper. She loved the gold star and chose gold and teal accents.  SO before we could hang the ornaments- we had to find a way to make the star work. I knew Phil had about 25 other things that needed his attention, but he sat with us trying bulb after bulb, getting the star up to snuff.

I spend an inordinate amount of time "fluffing" the tree to make the branches all lay the way they should after being cooped up for a year in the rafters. Of course there are 2 strands of lights (prelit my A$$) that are not functioning and due to time constraints- we just throw a few more strands in the mix. We finally call in the troops- the entire living room dusted in various colors of glitter. You know it's Christmas when it looks like an angel farted all over everything. Phil carefully unwraps ornaments, I set up the ornament ER- glue, ribbons and extra hangers for whatever crisis might unfold. There is copious ingestion of egg nog. The kids are comparing personal ornaments. I just watch, mostly loving how they interact and share memories. I am saving energy for the "finishing".

But as I look at the tree- I don't want to fix it- I think it's pretty hysterical how Phillip clumped all of his superhero ornaments together. He takes great pride in carefully placing the baby Jesus he made in kindergarten right below the star- his place of honor. Kiera carefully spaces her barbie ornaments. Splashes of purple around the tree are by Lily- dora, barbies, jasmine. The tripler ornament the year she lit the tree. The alex's lemonade stand ornament. Bella is willy nilly. She has the fewest ornaments in her personal box, mostly because she breaks things , but she tells Lily its because she is so much younger, her collection will grow. Someday they will take their ornaments and have their own tree. They ask one by one if its ok to hang my special ornaments. I let them, reserving a few of my favorites.

As Kiera and I finish the tree- light turquoise beads and gold ribbons and snowflakes. I see the red ball hanging there. One of the ornaments I used to lay under the tree and make faces into. Phil freezes. Where is the box?? The special box? He has packed up most of the boxes and moved them back to the garage. He grabs a nearby box and a sharpie writing on it: Jen's last family ornament and carefully lays it inside and puts it up on the cabinet. I am mumbling about the box and it's place of honor and I want to display it. The things that ornament has witnessed. A happy family in Ohio. Kids growing. A move to Colorado, several Christmases. Hanging precariously from a 10 foot tree as a crazy cat clawed it's way to the top, toppling the tree. Many of it's brethren were lost that year. The loss. The move to the apartment, a smaller tree. Being left in the box, the sadness too great. A move back to Ohio and a great journey to Hawaii. Part of me feels bad for not letting it hang on the tree. That's what it is supposed to do- but mostly I want to protect it and the memories it holds. And then I realize the memories are mine. Unless I share the stories, they will only be mine. It is time.

SO yesterday. Kiera helped me pack up Christmas. We found the box for the ornament and I shared with her the story. Just like when we took the ornaments out- we took the time to carefully pack them away with a story. How that ornament came to be part of our family. Some of the things it's seen and now it's ours. And as we put away Christmas, I felt better knowing the memory was mine to share.

Extra Pickles

Facebook does this thing now where it constantly brings up old memories and asks you if you want to share. I've really only been on Facebook for 6 years- and although these years have been pretty eventful, I have so many memories that flow in and out of my consciousness. In the shower and driving to pick up the girls from school are my "quiet" times and this is usually when a random memory will pop into my mind. I, of course think- I'll write that down when I'm done- and invariably the memory flitters away. 

After Lily finished chemo- it was years before I could eat a Subway sandwich. As you enter the first floor of Tripler on Oceanside- you are assaulted with the smell of fresh baking bread from the Subway in the food court. During Lily's treatment- it was pretty much the only option other than the cafeteria or little shoppette. It often was a treat lunch after a procedure. 

The smell of Subway became permanently associated with really tough times. Just the mention and I would groan. Yet, time does help. The kids love subway and although I often question how healthy it truly is- it is a better option than fried fast foods. It doesn't count as fast food in my book- but that's because the Ewa Beach Subway is the slowest known to man. Every. Single . Time we go in there- it's a comedy of errors- there's the lady who doesn't speak english who has been there for like 5 years- yet acts like she has never seen any of the ingredients before. And why can't we call it white bread anymore? Now it's Italian- so if you say italian- no one knows if you mean the sub or the bread- and then there's the BMT vs BLT- oh so much room for error. There's the young guy who I think has moved on to better opportunities- because if he is working you stand in line secretly hoping he fixes your sandwich because he does it exactly like you ask. And he knows how to work the register.

This week I went to pick up the girls from school- get there and remembered that they were in student council for another hour- I had forgotten to eat so I thought- I'll grab a sub. There is only one young lady in line before me so I am hopeful I'll actually get back in time to pick up the girls. I'm serious on this. The lady fixing her sandwich is clearly confused and they are struggling with the rocket surgery that is sandwich artistry.  Since my sandwich doesn't require toasting- I somehow jump in front of the young girl in line. The girl ringing me up wears a badge - "sandwich artist in training". She is very deliberate with sandwich building but we get through the process and she rings me up.  Of course I slide my card- there is confusion- she didn't make it a meal- I really wanted a drink- otherwise I'd take my sandwich and go. Now the young lady behind me in line is waiting with me. Since she is now waiting on me- I tell the sandwich artist in training to put her sandwich on my card- I ask her if she wants a meal- she shakes her head and tries to hand me cash- I tell her to grab her sandwich and get out of here while she still can. She thanks me and goes on her way.  

I drive to the girls school and enjoy my artfully created sandwich. A clump of pickles fall into my lap. I always get extra pickles. I have since I was little. I like the thinly sliced tangy little discs of flavor. It's the one time I allow the girls to count them as a vegetable- we all know they are not- but what the heck. And as I pop them in my mouth I remember another time long ago, when my family was whole. We used to drive into the mountains on weekends after we moved to Colorado. Dad would go grab Subway sandwiches and throw them in the little green oscar cooler. Phil and I now own that cooler- it has outlived many fancier newer coolers.  Every time- I'd ask for extra pickles. Usually I'd get normal pickles. I'd joke with dad- did you even ask for extra pickles. He'd swear he did. 

The year after Bob died, so much changed in our house. There was just a sadness you can't ever lose. You go through the motions. Dad travelled more, mom worked more- I tried to be anywhere. All of us lonely in our own way. Sometimes being together was harder- Bob obviously missing from our adventures. One less sandwich.  

Some of the trips blend together and my memories become one. I remember the trip we took Bob's ashes to the Mountains. Dad had gotten me a little penguin with a raincoat on his latest business trip.  It was appropriate- as in order to spread the ashes without people around- we had to be there early- the clouds hung low and we were enveloped in mist. We scattered the ashes- it was rainy and windy and they blew everywhere. It was NOT like you see in the movies. Dad tried to make it better- but there was just so much pain. We each took a bit of Bob with us that day- and not in the metaphorical, ethereal sense. In the don't disperse ashes when the wind is whipping around kind of way. But we were new at this.   No stuffed animal, no amount of hugs could take it away. 

We drove around. Enjoying the views until lunch. We stopped and dad pulled out the cooler. He had gotten subway sandwiches. We sat at a picnic table at one of the rest stops in Rocky Mountain National park. I remember it was cool but not uncomfortable. He passed out the sandwiches and handed me a small cup. It was a standard small beverage cup- filled to the top with pickles. He had gotten me extra pickles. I laughed and ate pickles until my stomach ached. 

It was something ordinary yet extraordinary during an extraordinarily rough time. My parents were gifted that way- they would take the tough times and give us extraordinary memories instead. I asked dad how he managed it- he simply said- I just asked for extra pickles. Sometimes you ask and barely get what you need and sometimes you get so much more. 

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.