The Forces that Drive US.

I am gonna try and catch up on blogging***maniacal laugh*** I say that realizing my schedule will not allow- so I will try to make time! There is no way to capture all we saw and learned and experienced in Europe - but I'm gonna try and do what I do- apply what we experienced in a way too lengthy post that I set out just to tell in one story, which will be woven artfully like my grandmother used to into about 5 stories- oh you remember So and SO she was friends with your mother's father's best friend's son who met so and so at....and then loop it back to So and So 10 minutes after you forgot what the heck you were talking about. Today is all about- Driving...

Love. Family. Friendship. Knowledge. To Be the Best. To have Fun. To Help others. Responsibility.

There are so many forces that drive us. For years I've felt guilty to even think about vacation. To think of the resources that might be "wasted" on the mere act of recreation.  After I was diagnosed, almost weekly Phil would mention getting our passports to take a trip to Europe. We would watch Downton Abbey and talk about a River Cruise on Danube.

But the kids' activities keep me busy. Too busy to breathe. Too busy to consider a vacation, although part of me began acknowledging it was time. Then the brain mets. Another neon flashing warning that I do not have time to waste. Yet time with my children at activities - although draining, was not a waste. It is what I wanted to do- to BE there and BE part of their world because someday I won't be. I didn't know if I wanted to spare the time away from them.

I threw myself into nonprofit work. Expecting the passion from others I felt. Some friendships suffered, but in my mind, this was for my kids- a foundation for them for having to live with LFS. Resources available for when I would no longer be here to help them find what they needed. Connection to others. I struggled because family and friends come first, and even though my "work" was entirely volunteer and self driven- it is very important to me. I have a lot of support. Then a few things happened that made me really question what I wanted and again if time was limited- how did I want to triage it?

My 40th birthday. When I was diagnosed with metastatic cancer- forever cancer- terminal- although not immediately- I knew I was incurable. I don't like big parties- despite the fact that I love to throw a good theme party for my kids. BUT I decided 3 years ago- if I made it to 40, there would be a big party with all my friends and family- a chance to hang out and visit- so no one could assemble at my funeral and wish they had seen me. I started thinking about the locations and what would be easiest for people to get to and logistics and I didn't feel good about it. And ultimately what if I picked a convenient destination and no one showed. And Phil brought up the passports. Several of my friends came to visit and hang out. I was honored and grateful for our time together. And some friends pointed out that well I wasn't really a good friend or business partner. And I decided the friend who had stuck by me for every chemo, through surgeries, through loss, through 4 c-sections- through some crappy stuff- really wanted to go to Europe, with me. I wanted to go to Europe. The tough part now- was letting it be about ME. And so I set a fairly unrealistic expectation- giving him plenty of opportunity to cry foul and back out. But not the incredible friend I married- he threw me the best honeymoon, birthday, European themed extravaganza ever. I forgot to consider his drive to make me happy might outweigh logistical ease. I was OK with it being about US.  But then again, we wouldn't know what to do with easy if it hit us.

Where we went in Europe- transportation was fairly straightforward. There are lots of options and Phil did his homework. Just like the internet has been a game changer for support groups and friendships- it really takes a lot of confusion out of public transportation. We relied on subways and trains(my new favorite form of transportation!) a lot. When my knees started giving out from walking too far or all the stairs up and down to the subway, we could take a taxi, or uber or bus. Transportation options are limited in Hawaii- and it really was fascinating to see how well all of these  options worked for us at different times in Europe. Our plan wasn't to drive except in Italy. Phil rented a car so we could see more of Tuscany and explore at our own pace. Talk about an unforgettable experience.  Each destination really has it's own culture of driving. In general Europe drivers are pretty fast and I wouldn't call it reckless- but there is a bit of a learning curve coming from Hawaii for sure. The signs are different- Car Siri and Google Siri never agreed on directions and well me I was too busy looking around to be considered a competent navigator.

One day after some stressful driving on Italian roads- Phil had a 6 Km respite from directions or roundabouts or exits or turns. "We've had quite a few epic road trips together." Just like that I started thinking about some of our long drives that we could now add Tuscany to.  Besides countless trips through the mountains, there was the drive east from Colorado to DC the year after dad died. We stopped in Oklahoma and Ohio. Hitting 6 flags over Texas. There were countless trips from Boulder to the Springs, then there was the Spring break push to Arizona. There was the Christmas after Phillip was born from Texas to Colorado when I got carsick. The move from Texas to Florida to Virginia, then back to Florida. There were several drives to Disney. The the cross continent trip to California when we made our big move to Hawaii. I miss driving- picking a destination and just seeing what you can along the way. Stopping at some crazy restaurant or attraction you saw a billboard for. In Hawaii- barring the silly traffic you can drive around the island in about 3 hours. You see a lot of paradise in that time, but after awhile- it kinda feels like- look kids- Big Ben, Parliament but look kids traffic, rainbows. So yeah- we were the silly Americans who felt compelled to Lampoon our way through every roundabout we could- and were there ever a lot of roundabouts.

Several times we would just stop during one of our pedestrian outings and just watch the traffic- it's impressive and really amazing the near misses we saw. Motorcycles zooming through narrow divides,  how the drivers seem to just adapt to the craziness of it and go with the flow or zip right past it. It felt like our life. It was nice to sit back and see it generally worked out. To not have to be in the driver's seat. We often joked about could you imagine teaching young Phillip to drive here? Recovering from the thought of it required several beverages of the adult variety.

The day after we returned, I had a parent meeting for driver's ed with Phillip. Nothing ever starts on time in Hawaii- and I was on time for a meeting that obviously started before the time I thought. I walk into a packed classroom and already am labelled as the late parent. It doesn't actually earn the Haole mom any points. But I already have my license. They go over the basics- basically emphasizing this course is a small part of the process and actually getting an appointment to take the driver's test will be the true challenge. The instructors take it seriously, yet offer a couple jokes about teens and their nature and the hazards of learning to drive. The kids get 6 hours of behind the wheel(BTW) training. There are 44 other hours parents are responsible for. I raise my hand- Phillip's permit is several moths old- we've done a fair amount of driving. We've covered the basics- even logged some highway driving. In rush hour. Those long trips back from the hospital appointments are great for logging driving HOURS. Can we backlog those hours? Absolutely the instructor says- all hours count and they can tell which kids have had them and which haven't.

Another mom takes my cue and raises her hand- what if you are terrified to be in the car with your child driving? How do they get those other 44 hours? Oh dear. No one laughs. Oh. Ok. The instructor explains that anyone over 21 can help your child learn to drive- aunties, uncles, neighbors, you can even hire people for $45 an hour. $45 dollars an hour! Forget Uber- I'm gonna let teens drive me around. I have good insurance- it should be fine. The instructor points out some of the basics they focus on in their BTW training and encourages parents to do so as well. One of our first lessons is driving backwards, we start at the parking lot and drive down the road to the boys and girls club parking lot. 

I laugh out loud. The room turns and looks at me. The instructor is not smiling- he continues on about this backwards driving lesson. Shit, it's not a joke.  So yes the kids get 6 hours of "official" DMV sanctioned/regulated BTW training and 1/6 of that is learning how to drive BACKWARDS! BACKWARDS. Driving. in a car. with 2 other teens waiting their turn. TO DRIVE BACKWARDS. Well it explains why a disproportionate number of people back into parking spaces here and don't stop for red lights- that part only gets a few minutes.

My brother got his license after his brain surgery. There was much talk about his wearing a baseball cap and hopefully no one would notice his shaved head or crescent shaped scar during the process. There were several times I refused flat out to drive in the car with him and walked home. Because I was 14 and knew everything and he simply was my brother and drove like a teenager- not because he had a brain tumor. I think I made my mom's job infinitely harder during that time- it's hard enough to make shitastic decisions between your dying child's biggest wish and general motorist safety without having a teenager question your every move. The judgement of others when dealing with these stressful times is never helpful. Especially young unexperienced teens. Or family. Or people who should be there to support you. We all lose a piece of our sanity and focus during times like that. You just do the best you can. Any time you get behind the wheel- you hope for the best and a whole bunch of luck. And always remember every one is driving with a condition you know nothing about ;)

I remember learning to drive with my dad. He was all about the defensive driving training- so theoretically I can reason my way through this craziness of driver's ed in Hawaii- but TBH I really feel a big proportion of that time might be better spent on different skills. Dad took me out in the rain, He took me to hills, in a stick shift- which I never figured out, until I was in college and a woman explained it to me in a way that made sense. We practiced skidding on ice, he would throw emergencies at me and I would have to react. We found dirt roads with ditches on either side. I learned that sometimes you may have to decide between hitting a fluffy animal and saving 2 cars of people. I learned to take the foot off the gas going into a turn and accelerate out of the turn- we went up into the mountains and practiced hairpin turns. He kept a running tally of points in his mind of all my infractions- points that had no real world equivalent but was a way for him to point out to me where I screwed up without screaming that I screwed up. I even got to drive around Maui in a convertible- with my mom furiously shaking the back of the seat like the secondary brake she wished she had. I thought I would be like my mom when Phillip drove- and he probably will tell you I do a fair amount of yelling- which may be partially true. But overall he's doing really well. I have no idea how well he drives backwards though. Fortunately I know more than enough time will be allotted for that in Driver's Ed-so if he abandons biology or music as his educational loves- he might pursue a career in stunt driving.

4 years ago- our world was thrown into yet another tailspin when I was diagnosed with Breast Cancer and Sarcoma. I had multiple surgeries in the span of a week. The urgency was that I had planned an epic summer trip with my kids to visit family and show them The places I grew up and I'd be damned if I was gonna let cancer throw a wrench in it. We drove from New York to Philly- where we visited with my aunts uncle and cousins and grandmas. Phil had to go back to work so the kids and I drove to Ohio to visit my cousin on her farm where Phillip got to drive around the Rustler. There may have been an incident with a ditch, but lessons were learned.

 We took them to Cedar Point- a childhood summer staple. I showed them where I was born in Toledo.  We stopped in to Cincinnati to see my Aunt and Uncle and cousins. I drove and drove and drove. It seemed to rain every time I got in the car. The kids watched Arrietty and Jackie Chan- over and over and over.  We grabbed my aunt in Philly and drove to Boston for full body MRI's - because when you live with LFS- you try and make the crap fun. And I had never seen Boston- so it seemed like a good idea. A year and a half later I'd get to go back to Boston, this time with cancer mets and solid support system of mutant friends along side my family and friends.

Like anything in my life- daily reminders pop out at me of what I have lost and what I am so blessed beyond words to get to enjoy. While Phillip drives he'll throw wacky questions at me. We have really good discussions about stuff I don't think he'd ever talk about otherwise. He's focusing on driving so he doesn't have to look at me while I talk back- but even if he pretends not to listen- some of it is bound to sink in. I don't remember many of the exact conversations I had with dad- but I know they are the foundation of who I am and what I believe. Just like I may not remember every ear infection, every fever, but I know mom was always there taking care of me. And she worked. And she was still a good mom. And sometimes she stayed home and she was still a good nurse and an equal part of my foundation. They are not mutually exclusive. Phillip is at the point he is beginning to worry about the what next. Getting his license has been a subconscious battle- I think he's leery of having the transportation responsibilities on his plate. He's worried about college. He's worried about me.

 Kiera and I have gotten to talk so much in our countless drives back and forth to activities. She is excited to get her permit and already pledges to take her sisters everywhere when she can drive. But then again she has the parental safety net for 3 more years whereas Phillip is in the final stretch. I would be lying if I didn't think about Phillip's graduation in a year and worry that it will parallel my high school graduation. I don't want to be the sick or dying parent. I also really want to be there- for all their graduations. But as many friends lament every single time their child grows bigger- with the "where did my baby go" - I grin and bear it because this year- I got to teach my son how to drive and that was something 4 years ago I wasn't sure would happen. And here we are. I'm grateful to be a part of each moment and milestone I can. I do a lot of good thinking while I drive and today as I drove back from the other side of the island- it occurred to me that for quite awhile I've felt a different drive- a need to get things in order, to impart on them everything I can for the eventuality that I might not be here. Yet on any given day that eventuality could become a reality. For anyone. And I am proud of my kids and would it be easy - of course not- it is never ever easy to lose someone. But our destination will ultimately be the same and we don't know how long it really takes until we get there. Our routes may be different and some of us just happen to be on the route with the big hills and lots of twists- but it will always be a drive to remember.

11 Years of Lily's

Lily was the first baby we "tried" for.  And even at that we really didn't have to try very much. We were in our first year in a new assignment, we figured we probably were gonna be there for a couple years so hopefully wouldn't have to worry about a move with a new baby and 2 preschoolers. I thought it would be fun to plan something like this. Get a nursery set up. Feel settled.  Ha.

As it turned out, a great opportunity in Hawaii popped up. So we took a chance and moved when I was 8 months pregnant, with 2 preschoolers to an island in the middle of the Pacific with no house, no family near by. We arrived at the tip top of the housing market. Hopping in and out of cars to look at houses when you are 8 months pregnant-meant that as we pulled up to a house- I decided immediately if I could see myself living there. If the answer was no- I refused to get out of the car. We had lived in base housing for years- I did not have high expectations.  Phil did not appreciate it much. I could blame it on the hormones but it's just me.  I knew that with 3 kids, we did not need a fixer upper. We ended up renting and built a house.

We borrowed furniture from the Air Force but splurged and bought a bed for us and a recliner. We learned real quick that stuff is stuff. There were many perks to the lack of clutter. I was borderline gestational diabetic, not by my blood sugar measures as much as by Lily's giant tummy measurements. We watched her closely and did 3 non stress tests a week. I had almost constant (fortunately not painful)contractions. I got to see her by ultrasound once a week. I had more ultrasounds with her than I had of all the other kids combined. Sometimes Phil and the kids would get to see her too. I look back and wonder if her tummy was so big because of the giant adrenal tumor, but there is no way to know. I remember them looking at her kidneys carefully. But bygones.

Lily was supposed to be a St. Patrick's Day baby. But as my 3rd c-section at a military hospital, I didn't get a lot of say. They picked the 16th. And when they called on the 11th and rescheduled to the 14th, I was so uncomfortable I offered to go in that afternoon if they wanted.  My mom was scheduled to get in later that week to help. We arranged for the other kids to stay with friends and we were all too ready for our Lily monkey.

Phillip was a bit of an emergency delivery, Phil and phillip had the flu when Kiera was born, so this delivery despite all the craziness of a move and new job, and giant sized baby was a little more laid back. Ha. Phil actually got to take pictures. It was the first time and only time I saw anything of my children being born. It was surreal. As he was cutting the cord and hanging out with her- I just felt relief, she was out, she was healthy and she was here. IZ's Somewhere over the Rainbow played in the OR as they sewed me up. It was beautiful. 2 days later we were discharged and picked grandma up at the airport on our way home.

Lily's Birthday

Adrenal cancer is no joke. The prognosis for Lily, according to the data was not good. They don't say IF it comes back, they talk about when. Her tumor was too big, it was making hormones, we had the blasted LFS working against us. The change of third tumors(she had that sarcoma in her leg too) is pretty high too. But against the odds is Lily. We are truly grateful for every day she is here. We cherish every moment we have together as a family. The tough ones, the great ones, the absolutely mundane ones. I've tried not to let her cancer past BE her identity. She was young enough, she really doesn't remember a lot of it. Even with all the battles with schools about adrenal insufficiency and some hearing loss and lots of doctor's appointments- we try to keep it normal. Which is silly because she is clearly anything but normal. And that is a really good thing.

I have always made a big deal of the kids' birthdays. I don't like being the center of attention but I love celebrating them. They are my greatest achievements and collaborations with a certain fantastic partner.  Over the past few years they have gotten to an age, their likes change and realistically I just don't have the energy to do huge parties. So we have been trying to find better ways to celebrate.

Lily's 4th Birthday

The kids have really stepped up and it makes me so proud. When out ordering a prom tux with Phillip, Bella suggests we should get Lily some earrings for her birthday. She and Phillip help pick out 2 really pretty pairs. I get her shamrocks to wear. When Kiera and I are out at Ross looking for banquet dresses- we see this fluffy purple monstrosity of a dress for under $20- we look at each other- Lily.  The kid is shaving her head at 11- when kids are just getting into the mean awkward social phase and I love that her siblings are looking out for her. We celebrate her birthday a day early since her actual birthday is on a Monday. Her actual birthday was earlier than planned so it is fitting.

Lily and I spent the morning assembling her St. Baldrick's poster. Which means I fought with the printer for a few hours while Lily glued down elements that the printer saw fit to actually print out. Then not only does Kiera make Lily's birthday cake while Phil takes the birthday girl swimming for some 1 on 1 time, Kiera dresses her up when they get home, does her makeup and hair and helps me with an impromptu photo shoot. Bella blows up balloons and hangs streamers. Phillip lets lily paint his nails because that was her request? Hey whatever works!

Then the greatest present of all on her birthday was hitting her St. Baldrick's goal! We spent the evening preparing awareness ribbons and postcards for Lily to hand out in her presentations at school.  After her presentations, she said she felt bad because kids cried. And we talked about how she handled it and that sometimes people have different hard things in their life and sharing our experiences is a good chance to help support each other even though we have different hardships. She  said that part felt good, the part where friends helped each other by talking about how her presentation made them feel. And that many kids asked about cancer and her time in the hospital because most had never been in a hospital or knew that she had cancer. This is the balance I try to find because cancer is a part of our world, but it is not the only part, even though a lot of times it feels like it. I am so impressed that Lily took this opportunity to share her journey and show how that inspired her to shave her head. So when these kids see her bald- they will understand a bit more why and that is a good thing. And beyond that they will see Lily, a friend and a cancer survivor.

Lily's Second Shave for the Brave- St. Baldrick's Event April 24

Lily's 1st St. Baldrick's 2014

Remember 2 years ago when Lily wanted to shave her head? It was an amazing experience for her  and in the process raised almost $5000 for childhood cancer research through St. Baldrick's. I had recently lost my hair due to treatment and many of the emotions were overwhelming.  She said at the time she was going to wait a year and then do it again. Not every year, maybe every other year. I nodded and said Ok because we were very deep in the uncertainty of my cancer treatment. Secretly I just hoped to be around in 2 years.

Well here we are. And not only am I here- Lily is no longer the only one in the family with fabulous curls. She is very proud to tell people that I have HER curls. In January she started reminding me she was going to shave her head.  Phil and I had just made plans to be off island and wouldn't be here for the event. Lily says- it's OK mom- I want to do this. You were there last time. I have so many mixed feelings, but the dominant one is pride. And to see her take the lead and do this for her is beautiful. We started talking about a fundraising plan. Part of me wanted to see if I made it more her responsibility, maybe the novelty would wear off. Silly Jen. I'll say one thing- that kid is mine. She sets her mind on something and good luck changing it.

This is what I say to cancer. 

In a world where I spend an inordinate amount of time trying to talk my children through situations where adults are behaving badly, children behaving badly and over all nonsense- there is this beacon of hope. As the dishes sit unattended in the sink, Phillip is composing songs and teaching himself to play the guitar. Kiera is supporting classmates who are having a tough time adjusting and fitting in while dealing with bullying and poor leadership. Bella soaks everything up like a sponge and then wrings it out and does shit her own way anyhow. And Lily, she feels intensely and struggles to fit in because in her almost 11 years, she's been through a lot. I look how well they are dealing with the past 3 years of my being sick and in constant treatment and although it hasn't been easy, they are remarkable. We are not perfect, but I try very hard to give them tools for happiness and to try and be the best they can be. So when she says she wants to shave off her beautiful curls to help people, we make a plan.

Lily's St. Baldrick's Page

I told her I would post on Facebook for her, but that I wanted her to write the info for her St. Baldrick's page and write the email thank you's. We again were flabbergasted that within a couple of weeks she had already made it half way to her goal of $5000. We know so many generous, caring people. At times I feel like all we do is ask for our causes, so Lily and I had conversations about other ways she could raise money outside of just asking friends.  She decided on Kool-ade stands and making invitations for her friends at school to attend the event. We talked about awareness and how although action is really important, so many people are not aware of St. Baldrick's and what it is about. Then it occurred to me- the 6th graders do IB exhibition projects. It's a self-directed inquiry that is largely based in a community service project. The kids identify a problem, research it, and work towards a solution. I started asking around at school if as a 5th grader, Lily might be able to do an exhibition project about St. Baldrick's.  Lily finally had to be the one to make a formal request. We sat down and I let her write her request, guiding only to help her clarity and format. We talked about which IB attitudes she was using, she even drew a mock up of her posterboard. We came up with a shamrock and gold cancer awareness ribbon.

Dealing with administrative red tape on the school level is not new for us. I try to be as active in the kids' education as possible. It was much easier years ago when I was not employed as a full time cancer fighter. Many parents work very hard during school hours and cannot actively participate, I always felt like it was a privilege to be present and involved at school. We have been lucky to have some sincerely supportive teachers in our time. Many I now call friends. It is a really nice side effect of helping at school, you get to spend time with quality educators who are very passionate, because otherwise I have no idea how they deal with all the added nonsense.

I also know it is not a common occurrence for a lower grade child to ask to do an extra project, but that really is what the exhibition and International Baccalaureate attitudes and learner profiles are all about. Unfortunately I fully expected for Lily to be told no, just not for the reasons that were given. I expected her to be told that she missed the Exhibition deadline and that it is a process therefore it would be too late for her to set up a presentation at the 6th grade Exhibition night. Personally- I feel it's like a curriculum fair and her presence would neither help nor detract from the other students' efforts- it is more of a community venue for Lily to independently discuss her experience with childhood cancer, the lack of funding and a present a call to action. It wouldn't undermine the efforts of the 6th graders and as she was not being graded or given any credit for the project, what is the harm? She would not be asking for donations. That is not what her presentation would be about. It is about getting others involved and letting them know about a local event.

The reason given was that the DOE guidelines would not allow it. Also that if Lily was allowed to do it, they would have to allow other students to do it as well. It was made very clear they could not endorse Lily or her cause in any way, but she would be allowed to speak about it during non instructional time. In a week where there was a gun threat at my teen's high school and a subsequent bomb threat today, I think our efforts would be better spent celebrating and highlighting community service efforts of children. To live in a community where the kids clamor to their teachers requesting special permission to make the world a better place and solve problems with big impacts, that's the community I am trying to foster.

Lily will be 11 on Monday March 14th. Monday is also the day of 6th grade exhibition. She wanted to spend her birthday honoring the cause she has chosen and spreading awareness. She is not asking for presents or a party this year which is ultimately ironic. Instead she is asking for donations to St. Baldrick's, so other kids can be as lucky as her.  None of us are guaranteed birthdays, yet here she when so many forces have stacked against her.  I cringe as adults celebrate entire birth months with extravagance and here we are- so grateful for each bonus birthday we are given and her willingness to use it to help others makes me proud beyond measure. She is allowed to present information to her grade level and we are trying to coordinate that with teachers as it has to be on non instructional time. She is also allowed to hand out ribbons before they leave for break.

Please consider sharing about the event, Lily's St. Baldrick's page or just commenting below with a Happy Birthday message for Lily, it would mean a lot to me. If you feel inspired to donate, that is also really appreciated. Lily's St. Baldrick's Page Thank you for taking time to read this.

Eddie Would Go.

If you have ever been to Hawaii, you've probably seen bumpah stickahs that say- Eddie Would Go.

Eddie Aikau was a Hawaiian surfer, lifeguard, hero and legend. He won the Duke's Invitational Surfing championship in 1977. He was a well known lifeguard in Waimea Bay, where no lives were lost while he was on duty and he braved up to 30 foot waves because he could. In 1978, he and a crew of the Polynesian Voyaging Society were on a 30 day recreation of Hawaiian migration between Hawaii and Tahiti. The canoe developed a leak and ended up capsizing south of Molokai. There was much debate over waiting it out or going for help. Eddie grabbed his surfboard and a life vest and went for help. He was never seen again. The crew was eventually rescued by the Coast Guard.

In 1985, Quicksilver began a surfing competition on the North Shore to honor Eddie.  The main condition is that the waves must be over 20 feet high. When no one else would dare, Eddie would Go.  The conditions of these big swells are particularly dangerous and only 8 Eddie Contests have been held. The last one was in 2009.

All day I've heard- the last Eddie was so long ago. It was in 2009. And for the life of me I cannot remember that Eddie. And let me tell you, it is a BIG deal on the islands. It is a contest of Olympic proportions here. I am not a surfer, the kids dabble because when in Hawaii and young, you give it a go. I have a profound respect for Mother Ocean. She is vast and she is strong. She is unpredictable and she is deep.  And it got me thinking- what was I doing 6 years ago that was so much more important than having any idea a major event was occurring?

We were a few months out of Lily's chemo. Her hair was growing back and we were trying to find new normal, again. And I got teary thinking about how LONG ago that was and how uncertain and afraid I was for Lily.  How afraid I was of losing her. How helpless I felt when she suffered and there was nothing I could do. Those times were relatively quiet compared to the previous year but they were indescribably difficult. It is something that is tough to explain to someone unless they have lived through crisis. Anyone who has, nods quietly with understanding. There we were, things were easy compared to the constant treatments and overnight feeds and ER visits and hospitalizations and scans- but somehow in the quiet the stress of the past crashes loudly around you. I don't remember that Eddie, but I remember how Lily's hair had the most amazing platinum blonde tips and she would have trouble sleeping and we would find her next to my bed or by the door. Bella would get lonely and we would find her with Kiera.  And part of you wants to live every day like it's the last and part of you realizes you have to maybe consider living today like it's the first of many to come.

That is the perspective living with chronic conditions gives you. Like the gigantic waves- sometimes riding the wave is the easy part compared to choppy white waters you have to navigate when it crashes. And then another wave crashes and holds you down. And so much of it is just luck and what you make of the breaks you are given.  When they discussed the big waves for the very first event- were they big enough? Were they too big? The statement was born- Eddie Would Go.

I've noticed this year the overriding theme of safety. Surfers are wearing vests, they are encouraged to drop everything and help anyone who might be in trouble. And I can't help but think- shit these dudes are psycho. They willingly look forward to going out there and getting pummeled. For what? A title? It's more than that and I have to respect the spirit of the Eddie. It is insanely dangerous and that is acknowledged.  But there is an overriding respect of nature and it's power, the mana of the ocean and it's waves. That's what it's like LIVING with a chronic illness.

Phil had last Monday off after working all weekend. There was buzz about the Eddie later that week. The waves were big enough- Let's go see them! Of course the guy never gets to chill and here I am dragging him to the North Shore to see big waves- risking traffic and flooding. But we got up there- and it is humbling- the strength and sheer sizes of the waves. Feeling the ground rumble. In 10 years we've been here, I've never seen waves that big and always wanted to. The waves were crashing over the road, leaving trails of mud and rocks. We decided to head back before it got too crazy busy.

I hear more often than I would like- people tell me they don't know how I do it. Once, Phil was told by another husband of a mutant that he would kill himself if his wife and kids all had LFS. I think that impacted us both dramatically. Why do we do it? I guess we have a choice- there's always a choice, some choices just suck more than others. We CHOSE to have children knowing that there might be potential hereditary cancer time bombs waiting in the wings. But mostly I'm astonished. We are choosing to live, despite knowing we are paddling out to monumental waves. Hell we've been riding waves for our entire lives. That is the nature of the ocean. We know we will get knocked down. We also know we might catch one. Or a lot. Or at least have the time of our lives or die trying to live. If that is not what life is about - then I don't know what is. Inspiring others by just doing what you love, that somehow it is perceived as bravery or strength. There could be worse things to be known for.

My waves are different than yours, which are different than someone else's. Choose your wave. Then choose to Go.  Team Mallory Would Go.

My funny Valentines Update

This will be a "quick" update.

Several weeks ago I had my brain MRI to monitor boobie the tumor in my cerebellum. She had grown a few millimeters and we have to keep an eye on her. So as Tripler likes to do at times- they referred me out for an MRI. They get swamped  and sometimes they just say we aren't scanning any more dependents. Yes it's annoying, but there are perks. The perks are NOT getting results- that is where the effort comes in. It's a trade off- scheduling at Tripler takes forever- but the results are right there in the system. Every time I've gone somewhere else- we have to hunt down the results. Mostly I'm just hoping since I don't have symptoms and no one called me to schedule new appointments we are still in the waiting and watching holding pattern.

This time we went to the hospital just down the road- same place I had my radiation consults. It's very nice, the people are nice, the scheduling was easy. I got to listen to music. The waiting area was comfy. Since Monday is a holiday- I will have my oncology appointment on Tuesday with chemo. My platelets are dropping and not rebounding. They are hovering just below the low limit the day of chemo. It's not low enough to transfuse but it does explain why I bruise easier and the bloody noses. As a result I try to take better care- avoid tackle football, that kind of thing. When it gets to a point where they dip lower, we will take a break from chemo to see if they rebound. The problem here is that break will give the cancer a chance to grow. This is the game we've been playing for 2 years though- balancing quality of life with keeping cancer at bay.

The other step is to add an aromatase inhibitor back in. Since I had my ovaries out- my body is not producing estrogen, but the body is amazing and has some back up systems- aromatase is an enzyme that can convert cholesterols into estrogen. By inhibiting it- you eliminate estrogen that feeds estrogen positive cancers which mine are. I tried Arimidex for a few months and struggled with aches, insomnia and anxiety. Bad anxiety. It was not good. So we took a break. We are now trying Aromasin- slightly different molecule so it should have a different side effect profile. So far it does. Day 3 my knees hurt so bad I could barely get up the stairs. I would pace around but they felt like they were going to give out. Icing and slathering with menthol became a full time job. The after school driving was brutal. I try to get out at every stop and walk around. it isn't fun. This will be a point of discussion Tuesday. As far as side effects go- its very minor. But it stinks. So there will be a trial period and if it doesn't get better-well we will have to talk about it. I know my onc is worried I will have to take a chemo break because of platelets and wants me on something. I've been chatting with some mets sisters online and like any of the meds- sometimes it gets better, sometimes worse- you gotta just wait n see.

Now the kiddos! Busy Busy Busy! Never a dull moment. Phillip is wrestling and doing well there- his eye healed nicely. He got a guitar for Christmas and is teaching himself to play. His grades are very good and we are still working towards getting his driver's license. He is dating a very sweet girl- who is also very busy but I really enjoy her when we do get to see her. I think all relationships exist via text these days which is strange to me- so we try to get the kids to engage in person more. As a result we actually encouraged him to take her to Junior Prom. A good lesson in relationships- do you want to go? Not really. Does she want to go? Yes, she's on council- she's planning it. Well then you better get yourself over to the office and get tickets- which aren't called tickets here, they are called bids. I have no idea why. Phillip is very independent and I really appreciate it, but I miss him. A lot. I am looking forward to wrestling being over and him being around more. He and Kiera get along really well and goof off which is fun to see.

Kiera. Oh my little mini me. I love her to death. Phil and I got to get away for the weekend for our anniversary and she asked my sister in law to please ask the girls not to mess up the house because she spent all afternoon cleaning. She also stripped our bed and washed the sheets for the sitter. She is doing well in school and unfortunately mostly learning to deal with persnickety teachers. She still takes voice and is upping her ballet to 3 times a week. We are on hiatus from performing. She still loves to perform and act but is learning that the politics of theater are not necessarily in line with who we are as people. Ah life. It stinks. Tough lessons. But you can not go wrong with being true to who you are and I am glad she took a break before it completely zapped her love of theater. I am hopeful we will find the right fit for her and our crazy circumstances. Until then we nurture her and learn and grow.

Lily Kayda . Oh Lily. She's smart and caring. She is still doing voice and her instructor has her doing Phantom and it gives me chills for so may reasons. Mostly its like a little mini concert- his voice is amazing and I can not believe the high notes that Lily hits. She is also in basketball at school and she brings her ball to the park when bella has soccer and shoots baskets. Definitely one of those times I wish my body felt better- it would be nice to go shoot baskets with her. The big news with Lily is that she insisted on doing St. Baldrick's again this year. She will be shaving her head in april to raise money for childhood cancer research. I asked her -can we just do lemonade stands and send money in- nope she wants to shave her head. Why? because I can and it raises a lot of money for kids with cancer. I felt icky when I had cancer and I don't want other kids to feel that way. Well there you go. I'll blog a link in the next few weeks in case anyone wants to donate. I know we ask for a lot of donations for different causes.

Bella Boo. My little red headed spit fire. She likes to make macaroni and cheese. which is helpful. but requires supervision. As does just about anything bella takes on. If only we could get her to use her powers for good. But then I remember saying that about Kiera. Bella tolerates school and piano and then Kiera asked her to show her how to play frozen on the piano and I've seen a shift. She will practice more now. She loves soccer and specifically being goalie. While the girls are at voice lessons we go to the soccer complex and I kick balls at her and she catches them.  We just finished up her Valentines for school- they had to be star wars and so we came up with a fun light saber emoji card where the light saber is a pixie stick.

Phil and I celebrated our 17th anniversary last weekend. So grateful to my sister in law, brother in law and friend who managed the kids for us for 2 days. We needed time away. It really helped morale. We also got to visit with some really great friends from Seattle- which did my soul good. All kinds of good therapy on the Big Island- whales, sunsets, sunrises, friends, good food. Mostly getting to be with my best friend. All right gotta get the kids off to school! I'll add pictures later and hopefully get around to finishing the 3 blogs that are staring at me!

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.