Lost post from 9/2014: Thank yous

Throughout this long year many people have emerged from different chapters of my life to support my treatment in a myriad of ways.  As my friend Matt (from high schools l) and I joked about yesterday morning, we are social chameleons, and fit into so many social groups and 'clicks' that we never really felt like we fit in in high school.  This is still true in my life.  Really it is just that we fit into many places, and I cannot be more grateful.

This is my shout out.

My Hillbrook and PACT families see me not just as a teacher or coworker.  Though I'm not on a campus and technically have no teaching position in my future, these two schools define what it is to be a community.  They have coordinated meals, rides, visits and inspired me with letters and phone calls.  At the beginning of my treatment, I invited many of them to a send off party and was flabbergasted when they arrived with gift bags of things to keep me occupied while I was undergoing treatment.  My teaching partner from two years ago, Susanna, calls me about once a month, just to chat, no other reason, and I love her for it, she has no idea how much I look forward to that phone call.  Four years have passed since I became a part of PACT, and though it was short lived, the connections have lasted and remain some of the strongest friendships I have.  If I'm not invited to take pictures before prom, I will be insulted.  My Hillbrookians simply make me feel as though I am on a long weekend, expecting me to come back just as soon as I'm able.  This normalcy in a year of nowhere near normal is indescribable.

A subset of my PACT family are what I fondly refer to as my Neighborhoodlums, they call themselves the SHABsters.  Simply put, my neighbors are why our housing prices are so high, they are worth their weight in gold.  They cook dinner and set it on my porch, give me rides to the doctor with no notice and send their children to fold my laundry.  I'd have it no other way.  I can't wait to be able to help them out they way they have cared for me.

Chavurad.  Our rabbi set up a group from our synagogue, made up of couples with one Jewish and one non Jewish partner.  They have visited me in the hospital, made plans for me to look forward to and kept our online community alive and well.  Their support from a distance has really kept my spirits up.

When Shac and I first started dating, we would regularly enjoy 'Thirsty Thursday' with his coworkers and their significant others.  Throughout the years, this tradition has faded and the guys have started to work at different companies.  Somehow, we still maintain these friendships.  The ladies that started out as girlfriends to these guys that couldn't stop talking about work, have become wives and mothers.  Their friendship means the world to me.  Just quick check ins, emails of pictures of the babies that growing up far too fast and brunch have replaced those beverage nights.  Our rounds of holiday parties have already begun, I can't wait to be in their houses and company again.

I worked at The Container Store for nearly eight years.  Though it was just a retail job I took when I needed work after college, the friendships I made there became lasting.  Sabado, Maria and Ruth have taken care of me, visited me in the hospital, checked in, cared for my dog and reminded me that those foundation principals are alive and well in and out of that store.  Countless others of my old coworkers have sent and posted words of encouragement from near and far.  Though three years has passed since I left, I truly feel like I grew up there.  My only regret is that for some reason it took this to happen for us to reconnect, why is that?

Yesterday was the first day of school for the University of Oregon.  It was my professor and mentor Sandy's last first day, as she will be retiring along side her husband Joseph at the end of the school year.  I cannot imagine that department without the two of them.  In my college years, they were not only my professors but acted as my surrogate parents.  This January I was fortunate enough for them to visit when I was in some of my hardest days.  I graduated 12 years ago, but I will always be their student.  Others of my duck friends have also popped out of the woodwork to wish me well from afar.  Katie has walked from Mount Hood to the coast honoring me with my name her race number, as well as sent an adorable homemade pumpkin had for me to keep my head warm.  Alana from Alaska, my freshman year dorm neighbor sent hats and and interesting read all the way from the great white north.  Though many years have passed just these little thoughts show me that time is nothing, and our bonds still hold strong.

Even farther back, messages of hope have reached out to me from friends from middle, high and elementary school.  People I've know since kindergarten, old family friends, have written and called to check in and say they are thinking of me.  One of my favorite moments was in the early spring.  As I sat in my hospital bed preparing for chemo, I saw an EMT gurney going by.  Then I realized I knew that EMT!  I shouted, "Come back to (my room number) if it isn't life threatening!"  A head whizzed around and poked into my door, it was equipped with the brilliant smile of my friend Lance.  All I could get out was, "You, hug, NOW!" before the tears came.  It was amazing to see this man, husband and father of two, as I drove a boy to high school most days for two years, mostly one of us running late or ill prepared.  He had been asking about me at the hospital each time he came in for another patient, but due to security, they could tell him nothing.  We clarified with the nurses that he may be given that information, and he offered me an ambulance ride anytime I needed one.  Just seeing a grown up successful version of someone I grew up with meant the world to me.  Today, six months later it still brings tears to my eyes.

Waiting and the Woodwork

Because of kidney function, I am waiting to do my LAST round of chemo.  It was supposed to be Monday, we will be waiting at least a week.  My creatinine is high, and dropping slowly.  All I can really do is drink plenty of fluids and keep my mind off of it.  So what am I doing?

I've mopped, called the plumber, played with the dog and sewn.  I need to go to the post office to mail some gifts.  I guess I should eat lunch.  Shac and I bought party decorations over the weekend, there are far fewer 17 decorations than 16, 18, and 21.  The couch is firmly being held down.

Yesterday I had the opportunity to visit with some old friends who did a remarkable thing.  Jennie and Matt rode 100 miles, and kilometers respectively, for early detection of cancer.  Unfortunately, cancer has touched the lives of many people close to them, to honor their struggle and raise money they did a century ride with the Canary Foundation.  Jennie and I have known each other since elementary school, and her husband Matt was one of my close friends in high school.  I really enjoyed spending time with them and meeting their adorable and kind children.

Throughout this long year many people have emerged from different chapters of my life to support my treatment in a myriad of ways.  As Matt and I joked about yesterday morning, we are social chameleons, and fit into so many social groups and 'clicks' that we never really felt like we fit in in high school.  This is still true in my life.  Really it is just that we fit into many places, and I cannot be more grateful.

The thank you's will come later.

The One Where I Rant About the Hospital

First and foremost, I LOVE MY NURSES.  They are the best people on earth and keep me alive, sane, fed, entertained and laughing through this ordeal.  Just the other day, one of them decided it was backwards day, so everything was backwards in my whole room for the day.  Why, Why not?

I never tried to keep track of how many nights I have spent in the hospital this year, it didn't seem important.  Roughly, it has been between 60 and 70.  In those two and a half months I have learned, slowly of the idiosyncrasies of this hospital.  It is one of the best in this area, no doubt about that.  I've always had a private room and no unreasonable problems.  All of these complaints are merely cumulative, and just frustrate me because I have spent so much time here.  Last August when the kidney came out, I couldn't speak more highly.  I'm just worn out at this point.

Anywhere you are forced to stay for that many nights not by choice will wear on you.  And it has.  Here is my rant:

The air is dry and stale.  Once I have been here for a few hours, the hospital smell permeates everything I have brought with me.  Though the smell is clean, it is so sterile it makes you gag.  The air is so dry, SO dry.  All of my medications dehydrate me, then there is this dry air, my mouth and skin feel like paper and there is no amount of lotion that can help. Thermostats are also peculiarly ineffective here.  There are two ways in each room to set the thermostat, on the wall and on the tv menu, neither of which seem to work.  Tuesday I just resorted to wearing three shirts and two hats, now I have on flip flops and a tank top.  Something doesn't add up.

There are a mass of machines in my room that are on at all times.  Beeps, clicks and lights hover around my face at all times of the day and night.  Since they get to leave the room, no one remembers to shut off the dang blood pressure cuff so it doesn't beep every minute.  The pump that feeds me medication clicks every thirty seconds, and that is for each medication, sometimes I am getting three at once.  Computers screens are left on all night, right by my face.  It is like sleeping next to a Vegas Marquee.

A hospital is a 24 hour business, I am not a 24 hour person.  Though I am 33 years old, I have a bed time, and a time I like to get up in the morning.  The hospital does not care.    If they want to know my blood pressure at two am, the come in turn the lights on and take it, every four hours if I get someone who doesn't know me or is new to their job.  FYI, yes some of my medications can effect my blood pressure, but it has been consistently 110/65 for the past 13 months.  Today, my weight was needed at 4am.  Why that couldn't wait until I got up at 7:30am, I have no idea.  I understand being awoken for scheduled medications and emergencies, but these vital sign checks on a patient they know so well, and so consistently are redundant and unnecessary. I've taken to drawing a cute picture of me sleeping with a funny saying like "Don't wake the princess" and putting it on my door when I go to bed.  When I include a time I am likely to get up, it is honored for the most part until the morning rush.

And then there is the concept of morning.  I have never claimed to be a morning person, especially given my life in theater, I am much more of a night person.  Morning is defined by the rising of the sun to me, anything before the sun is night.  I have famously said many times I only get up before the sun for Disneyland, so where is my Mickey pancake?  Lab work is usually drawn between 5 and 6 am, to get all the current patients through before surgeries start at 8am.  This is usually before the sun comes up, and therefore is night to me.   Morning shift nurses start at 8am, so before they arrive, night shift nurses need to give you all their end of shift checks, meds and breakfast before the morning shift arrives.  In the 'morning' there is a flurry of activity, labs, meds, vitals, trash pickup, volunteers checking room supplies, cleaners.  Guys!  I'm here all day, you can come back in the afternoon when no one comes for hours.  It doesn't all need to be done before 9am.

I forgot about Lew!  Lew is my IV pole, I have to take him everywhere I go, everywhere.  There is tubing attaching Lew to my port, and then a cord attaching Lew's pump to the wall, so I have about an eight foot radius of movement.  When I walk down the hall, I have one hand pushing Lew.  When I arrive each Monday, the first thing I do is seek out the IV pole with the best wheels, not ones that stick like the lame shopping carts, then I hunt down a pump that doesn't squeak.  At night I have to make sure not to tangle myself in the IV tubing that connects me to Lew, this will cause my pump alarm to go off and my medications not to flow.  When I am at home, un attached, I still swat the phantom IV lines away.  I am sure many years from now I will still want to push an invisible pole down the hall in front of me much like John McCain still feels chained to that Korean POW camp.

There is no such thing as privacy in a hospital.  I have a door and curtain that close, they do not lock.  We all know I am a very open person, so I generally leave my door and curtain open, I make friends with people in the hallway, it helps pass the time.  But when I do close the door or curtain, or go to the bathroom, I'd like my privacy honored.  A knock, maybe try back later, just a little respect.  The doors to the bathroom unlock from the outside for safety.  Again, I am an ambulatory (mobile and lucid) patient, if I'm in the bathroom when you come in my room, I am using the bathroom!  Let me pee in peace.  Not to mention, my urine is collected and measured and I have to alert the nurses when I have a bowel movement and sometimes discuss its consistency.  It makes me feel inhuman.  There is no such thing as privacy in a hospital.

I've saved the best for last, food.  Let's start by talking about the water.  Something is going on in the pipes here, the water tastes very metallic.  Chemo is known to mess with your taste buds and create odd flavors, metal is a common complaint, so I thought it was just me.  Then I tasted the water when I first arrived before meds a few months ago, nope, still tasted like metal.  Shac and other friends drank it commenting on the odd taste.  So now I just bring my own large bottles of water for each stay.  Forgive me, but in a healthcare institution where people are trying to get better, don't you think reliable drinking water should be at the top of the list for patient rights?  This brings us to food.  It is not that the food here is bad, its just that it is uneventful.  If you were staying a night or two, no problem.  Again, I'm somewhere close to 70.  There are choices, consistency and even desserts.  In the bay area I was surprised to see so little international flavor, that was disappointing.  It is institutional food, carefully packaged and portioned, and grey.  Luckily there is a fridge available to me, and my lovely husband and family bring me food daily.  Before I come in, I stock up on snacks I can keep in my room and pre make dinners for a few days so I have things available when I get hungry.

Ok, that's it.  I'm done ranting.  I'm sorry I had to do it, but it needed to be said.  

The Butterfly Still Flies Strong

September is Childhood Cancer Awareness Month.  Unfortunately, this is something I know a little about.  Though I have known a handful of cancer survivors in my life and am one myself, Childhood Cancer is a gut wrench for me.  For a tiny person to have to comprehend and endure what I am going through each day is ridiculous, and yet I know someone who has had to.

Flower girl , September 2014

This is my friend Scarlett.  Isn't she beautiful?  Just a few weeks ago she walked down the aisle as a flower girl in her uncles wedding.  Next month she will be four.  She can tell you the name of about a dozen plastic animals, and pulls them out of her purse to show you.  Her favorite things are dance parties, playing with Cosmo the wonder puppy, nature, and driving her mom and dad wild. At my house she likes to do chalk drawings, climb the couches and stairs, and play with blocks. Her family and I will be going to Disneyland during ‘The Year of Yes,’ and I just can't wait.  She is a thrill seeker, and I am always happy to foster new generations of those.

Scarlett's First Birthday Blood Drive, 2011

These are her amazing parents, Brandi and Chris Wecks.  They were high school sweethearts and went to prom together.  Then they went to college, got married and continued to support each other through first careers.  When I met Brandi she was teaching at Stevenson here in Mountain View. 

She and I became friendly while I subbed throughout the district.  Stevenson is a parental participation school that prides itself on project based learning and hands on techniques.  Brandi quickly learned of my art background and started requesting me to sub on their school wide art days.  This is when I started to get to know the rest of the staff.

One day in September of my second year subbing, I got a call while at another school site that Brandi had requested me for her upcoming maternity leave, she was expecting ‘The Butterfly.’  I was so excited for her personally and myself professionally, I flew straight over there after I had finished my assignment for the day.

Shortly after we started team teaching to get the kids used to me and myself knowledgeable about their classroom norms, conferences followed by a family emergency for Brandi took her out on leave early.  So the kids and I flexed to each others style, and we put a little paper baby cut out on Brandi’s due date on the calendar.  A few weeks later, I got notice that Scarlett had arrived and adjusted the calendar baby to the right date and put her name on it.  Our calendar lesson was very exciting that day! 

A few weeks before December break Brandi started attending staff meetings and developments again, sometimes bringing the tiny pink Scarlett with her.  It felt like the beginning of the end of a time I had enjoyed so much.

Unfortunately, December brought darkness and uncertainty.  I got a phone call as winter break was starting from a coworker: she had just talked with Brandi, there was something going on with Scarlett and she would keep me updated.  Ominous.  Over the weeks of break more information was fed to me from reliable sources that the most unbelievable thing was in-fact true.  
At Scarlett’s two month appointment, what they thought was a bruise over her left eye was actually a brain tumor the size of a small adult fist.  There was talks of hospice care, second opinions, lots of visits to doctors all carefully blogged by Brandi and Chris.  www.starringscarlett.com  They have been blogging for four years now.

In January, I was forced to take on the uneasy task of explaining to our classroom community what was going on.  Because it is such a tight knit group, much information was already swirling about when school got back in session in January.  So, when we arrived back at school I sat down on the rug with a group of twenty six and seven year olds and said, 

“Scarlett is very sick.  There are many doctors and nurses trying to help her get better.  We are not sure if they can, but they are going to do everything they can. When you are sick your mom and dad want to stay with you, and do everything they can to make it better, don't they?(nods and murmurs)  That is what Mrs. and Mr. Wecks are going to do.  They are going to be with Scarlett as much as possible while the doctors and nurses take care of her.  Since Mrs. Wecks is needs to be with Scarlett, I am going to stay with you.  I will stay for as long as Mr. and Mrs. Wecks need me to.”

I never used the word cancer, tumor, cranioplasty or death with those kids.  They were six and seven years old, and such big words simply bring fear of the unknown.  I needed to use serious words that wouldn't scare them but that would allow them to understand the gravity of the situation.

And they did.  They wrote letters and drew pictures, asked daily for updates.  On what we called ‘Doctor days’ (surgeries and scans) they all wore and drew butterflies.  Even though we were studying penguins, that classroom was full of butterflies.  Shortly after the initial kid conversation, I had a similar one with the parents, with the help of my coworker Amanda.  This is when we used the real words congenital glioblastoma, multiple surgeries, second opinions, chemotherapy, and chance.  They started collecting donations and set up a food calendar to do what we could in this time of need.  My only request was to not ask me for updates in front of the kids.  My job in this catastrophe was to stay strong for them, and I did, I hope.  I taught every day for the rest of the school year, including three months with bronchitis.

Scarlett's First Birthday, October 2011

In the spring three bright faces visited our class one day.  Two I recognized, one much smaller and partially collapsed, but the bright eyes of a tiny baby I had once met were staring back at me.  This is when the tears came.  I just grabbed the smiling Chris and started bawling, when he asked what was wrong I responded with, “Nothing, absolutely nothing, I am just glad we are ALL in the same room together!”  For some of the kids seeing  Scarlett for the first time was a miracle, for others it was hard to look at a little baby with a caved in face.  We talked about our emotions the next day, and for many days after.  

Over the course of the next three years, Scarlett endured a dozen surgeries both to remove tumor growth and reconstruct her skull.  She has received over two dozen rounds of chemo therapy, and more blood transfusions than we can count.  She has relapsed once, and been in remission for about a year now.  Because she spent so much time in the hospital during her youngest months, she has a feeding tube because her sucking reflex development has been stunted.  Chemo damaged her cochlear hairs, leaving her very heard of hearing.  She wears hearing aides, signs and speaks.  Due to multiple brain surgeries, her mobility was slow to develop, she just started walking earlier this year, it was the second most miraculous thing she has done yet, behind opening her eyes after that first surgery.  Scarlett will always have developmental delays because of all she has gone through, but she persists and keeps going.  Weekly, she has preschool at an amazing school for the deaf, physical therapy, family sign language class, and more specialists than I can keep straight.  She inspires me.  Her parents are the definition of heroes. 

Scarlett and I at my wedding 2012, she is one and a half

I feel grateful to know and be a part of their story.  When I received my diagnosis this time last year, Brandi was one of the first people I contacted.  Her knowledge lead my first rocky days down a smooth path for which I am forever indebted.  Scarlett had to go through more in her first year of life then I have had to in just a year worth treatment, and they are nearly over.  She is the reason I know I can do this.  She gives me hope and reminds me to have endurance.  

I am still close with many of the kids in the class Brandi and I shared that year.  When my diagnosis came, their older and wiser selves had a flood of memories and a more mature, concern.  This is when I realized my job was to continue to be that example I had been during Scarlett’s diagnosis.  They are older now, fifth graders, and can understand so much more, but they are still children, for whom we must model strength in challenging circumstances.

My shirt for her Second Birthday Blood Drive, 2012

Two times I have explained cancer to a group of people under the age of ten,   Some of them were the same people under ten.  If you find yourself in a similar challenging situation, I hope I can be of assistance.  Keep in mind their age, and what they can comprehend and not be scared.  Use words they know, medicine and doctors work better than chemotherapy and surgeons.  The age of the child and their previous experience in the medical field will impact their reaction, be mindful.  Kids who have only known elderly people with cancer will react differently, as their outcome was complicated by their advanced age most likely.  State the facts and tell them you are open to questions.  In some cases these questions may need to be answered privately because one child may be able to comprehend more than another and again, fear.  Be honest, validate feelings, and listen.  It is okay to be afraid, scared and uncertain.  Learning to feel our feelings is an important part of the growth process and helps kids learn empathy.  Give them an outlet, drawings cards and letters satisfy busy hands and frantic minds.  Communicate with whole families, so as adults we know the harder truth of what the situation is.  We can also support our little ones by keeping each other informed and nurtured.  Keep the dialogue open, questions still come my way about Scarlett regularly.  Kids have huge hearts and openly give love to those who earn their trust.

The Wecks Family September 2014

---
Today is day two of five for round 16.  Then there is round 17, followed by ‘The Year of Yes.”  YES!