Sunday, November 22, 2015

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.

Wednesday, November 4, 2015


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.

Lily Kay Monkey

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