Nurses Are the Nicest

Instead of thank you card or gifts for my medical staff, I have spent the past year composing a poem. I also made cupcakes and brought sparkling apple cider. Then I posted the poem on about ten feet of butcher paper by their break room door.  It's been fun to watch them stop and read each other's stanzas and giggle.

Nurses are the nicest,

Karen greets me at the desk.

She finds me the nicest room,

So I can get lots of rest.

Anne Higa helps with transfusions,

And unties my lines.

Since nurses are the nicest,

I can count on her anytime.

Nurses are the nicest,

Cesar answers all my calls.

And when patients really need it, 

He rushes to them through the halls.

Miradel's delightful,

She really is just that.

Nurses are the nicest,

Please give them the right hats.

Nurses are the nicest,

Brenda is so dear.

She is supportive and so thoughtful,

For my kidney she does cheer.

Liz pretends she's angry,

But really it's a game.

Because nurses are the nicest,

I'm glad she's in my life again.

Nurses are the nicest,

They like Disney too.

Lora Lee loves Mickey, Alice,

Buzz and Winnie the Pooh.

Hannah is Macgyver,

She can craft anything.

'Cause nurses are the nicest,

Who knows what her skills will bring.

Nurses are the nicest, 

They also have great appetites.

As long as Irene gets some muffins,

There won't be any fights.

Bre's a little mischievous,

She lets me put eyeballs on the tugs.

But since nurses are the nicest,

She's also great for hugs.

Nurses are the nicest,

They do medical stuff and more.

Darren always keeps me up to date,

Like when the Giants score.

Rolando is so jolly,

He's singing in the halls.

But since nurses are the nicest,

I don't mind the thinner walls.

Nurses are the nicest,

They are so sweet and kind.

Kawa is so friendly,

Her infusions I don't mind.

Mabel's the night ninja,

She medicates my dreams.

Because nurses are the nicest,

Through her whole shift I sleep it seems.

Nurses are the nicest,

Jessica is my chum.

We swap puppy pictures,

Makes me want another one.

Lily is so lovely,

She makes me feel at ease.

Because nurses are the nicest,

I feel so sad to leave.

Nurses are the nicest,

They hardly make a peep,

Isagani tiptoes in, 

To take my vitals as I sleep.

Paula is an angel,

She gently comforts all.

Because nurses are the nicest,

I search for her smile in the hall.

Nurses are the nicest,

They really are a kick.

Michelle is friendly and kind,

She dotes on everyone who's sick.

Kristy is my homegirl,

She takes good care of me.

These nurses are the nicest,

I can't believe I'm free!

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

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

The Long Wait

*updates have been made to Chemo Playlist*

It has been really hard to wait to be allowed to get chemo.  That is an odd thing to say.  It isn't like chemo is something people want to undergo.  Continuing my treatment and finishing chemo is, so it was frustrating to have to take so much time off between rounds 14 and 15.  Here's what happened.

As I hope you have learned by now, chemo works by killing off offensive cells in your body, and especially your blood.  The first delay was just to let my blood cells recover for chemo.  After waiting the weekend, my kidney function was then out of sorts.  Surviving on one kidney is just fine, in fact you can live a full life on one third of one kidney, but not when you are trying to push chemo through it.  Needless to say, Reggie wasn't too happy.  It took a week and a half of daily fluids to flush the build up out of my kidney and have my creatinine levels into a safe range to once again push chemo through it. 

What did I do in my off time?  I made the most of it.

When my grandfather passed away in February, he left moms childhood home with a need for a deep cleaning.  Through the mounds of family photos and ancient stuffed animals, we have also found my moms record collection.  No they are not for sale, they are her records!  It has been an emotional experience to clean the house, but I am glad I can help my mom with a challenging project, and that I'm feeling up to it.

I also kept up my end of a promise.  At the beginning of the summer I posted a list of one of my favorite authors summer reading suggestions for children.  Along with this list I promised that if any of my students were to read one of these books, they would have to discuss it with me, over ice cream.  Only one kid did, ONE.   Morgan and I enjoyed discussing Harriet the Spy and our custom ice cream sandwiches very nicely.  Her sandwich was rocky road ice cream with a peanut butter cookie on one side and a chocolate chocolate chip on the other topped with oreo crumble.  I had carmel fudge swirl ice cream and chocolate chip cookies.  They were almost as delicious as the company.

While I was getting hydrated every day the house on the corner went up for sale.  Tradition in our neighborhood is that the kids host a lemonade stand while the open house is going.  This alerts potential buyers to the fact that there are kids in our neighborhood, and they will adorably sell you lemonade.  Because I had to go in for hydration, Shac had to supervise for me, I took over when I got back from the hospital.  Molly, Audrey and Oliver each made more than $5, but they really ought to start charging more with what they were asking for the house.  Our neighborhood rocks.  Whomever has bought that house (it was only on the market for five days) is one lucky duck.

During the third weekend of my break, I invited myself on an outing I heard about.  Some of my former students and their families were going to a minor league baseball game, my favorite kind, so joined in.  I figure if I'm not in the hospital, I might as well have a good time if i'm feeling up to it.  So I did.  Ball game, awesome kids, wonderful parents and friends, tasty food makes for a classic good time.  I can't wait to be back on campus with my bears, I'm so proud of them going out onto the field to sing "Take Me Out to the Ballgame," what a treat.

Summer is drawing to a close.  Many of my past students started school this Monday, and the next group start next Wednesday.  A new chapter in their lives is starting and soon, hopefully very soon, this chapter of mine will be over too.

Saturday I went in for chemo.  As predicted, since I had had so much time off, I certainly seemed to feel the effects of the chemo more.  I've been in bed since then, or at the drs office getting hydration to flush out my kidney.  Hopefully this is the beginning of the end because I have two rounds left.

TWO ROUNDS

TWO, out of 17.

Holy cow!

Round 14

I have eight days of chemo left, total.

Round 14 was delayed a few days.  Reggie (my right kidney) needed a bit more time.  Kidneys filter all of the blood in your body, the waste product being urine.  When you only have one kidney, its more work.  When that one kidney is processing toxic materials, like chemo, it has to work really hard and can result in injuring the kidney.  Injured kidneys don't filter waste as effectively, this can lead to permanent damage.  My doctor is trying to prevent that permanent damage.  Kidneys are like your liver in that the internal structures can repair themselves, if not too far damaged.  This is where Reggie is right now.

Instead of coming in last Wednesday, I came in on Monday.  It was crowded here at the hospital, during the week it has thinned out.  Monday morning was busy and full of excitement, my cousin Ottilia who has just finished her nursing program and passed her boards, was able to come for a visit at the exact time my nurses were accessing my port.  Chemo and oncology is a nursing specialization, so not something she had much exposure to in school.  I was so glad she could see this process first hand!  While one nurse was accessing my port, Ottilia watched, another nurse was updating the information in my chart asking me questions about my at home medications and my doctor arrived to do my pre-chemo assessment.  It was quite a busy half hour.  Felt a little like I was the race car and they were the pit crew.  Seriously-my bed was raised about a meter off the ground, blood pressure cuff on one arm, thermometer in the mouth, tape and needles happening at my right shoulder, while a barrage of questions fluttered toward me.  My room felt very quiet when they all left.

Tuesday and Wednesday brought visits from friends I hadn't seen in far too long.  Michelle, Trina, Marcy and one of my students Morgan and her Mom Karen all came.  They each brought little treats, snacks, toys and flowers but the also the most important gift of all, their hugs and support.  Each of them comes from such a different chapter in my life to see them all in a short space made my heart feel very full.

Yesterday I had a blood transfusion.  It was a little different than previous transfusions I have gotten, as it was going at the same time as chemo.  This meant my nurses had to start a peripheral line, so for the first time EVER during chemo, I got poked in the arm.  There is a first time for everything, even in round 14.  Blood products are sensitive, as is chemo, so I cannot receive them both into my port simultaneously.  I had five lines at one point: Peripheral 1)right arm-blood, Port 2-5)chemo, fluids, mesna (bladder protectant), and anti-nausea meds).  That was a record!  There were so many tubes I had to stay in my bed.  At one point I got up to go to the bathroom and got tangled up in all the tubing.

Today is Friday.  I am feeling very normal and looking forward to going home tomorrow.
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Ten days ago, one of my college professors, Jack Watson passed away.  He had been suffering with complications due to a series of strokes he suffered in March and had been slowly making his curtain call since that time.  He was one of the first cancer survivors I knew, having gone through chemo when I was a freshman in college.  One of the first memories I have of him is in The Robinson Theater at The University of Oregon wearing a Portuguese fisherman's cap watching the production of Nicholas Nickleby he was supposed to have directed.  It was six hours of Dickens, he had to pass to his coworkers and grad students due to his frail state.  Two years later, I felt honored to be accepted into his London Theatre program where we spent spring term with 20 other students, never having accepted that frail role I thought he had been cast in.  

In my own teaching career, Jack has had a funny way of making cameos.  He once described me a 'force of nature', a term I have since used to describe students.  His tough love, take no excuses, expect the best attitude is alive and well in my classroom.  Jack's loving partner Rick is planting a tree in his honor.  Just this morning I've found out it is a cara-cara orange, the pink ones I love and often share with my students.  This makes me love them even more.  

Jack, thank you for the mark you left on the world, on me, and on your grand-students.

Moving Mountains

Today I told my oncologist of my plans post chemo.  Cancer has a way of making you look at your 'bucket list.'  One of the things that has sifted to the top of this list over the past ten months has been Half Dome.

As an eighth grader, I spent a week in Yosemite participating in 'science camp.'  Some of my strongest childhood memories are from that trip, Heather and Hila!  My hiking group hiked to the top of Yosemite falls, where snow was still on the ground towards the end of March.  We were one of the only groups that year to make it all the way to the top, so I still see it as a big success.  My sister went on this same trip two years before me.  My dad's love of hiking is epic.  He chaperoned the Yosemite trip ten times, hiked Mount Whitney with my grandfather when he turned seventy and generally loves any mountain.  Since that first trip to Yosemite in the 90's, I've kinda wanted to hike Half Dome.  Beating cancer has become my excuse.  I'm so excited my dad and sister are going to do this with me.

Though my doctor was startled to hear me say, "When I'm done with chemo I'm hiking Half Dome,"  after explanation of how I was going to train, he was on board.  Apparently, he has done the hike twice himself and claims it 'wrecked his knees.'  I told that my sister has the knee problems and I have cancer.  He did not advise me against it.  Instead he said very plainly, "No, you had cancer,  We are past that now."  All I could do was hug him.  It is a pretty powerful statement, and coming from a doctor even more so.  It's not something I allow myself to say, for fear of needing to retract it.  So, I guess I'm getting ready for Half Dome!
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Doctors and nurses have all told me I'm running a marathon throughout my cancer treatment.  This analogy never suited me.  I know no-one who has ever run so much as a five K without at least stretching or jogging first.  If I was running a marathon without training, I would have collapsed from dehydration and fatigue before my hair had finished falling out.  The purpose of running a marathon is to finish as quickly as possible while enduring.  No matter what, the runner finishes feeling much weaker than they started.

I like to say I've been climbing a mountain.  As an avid hiker, this analogy suits me much more and I think is conducive to chemo.  The purpose of hiking, and climbing mountains is to finish the hike; sometimes you end up where you started with a new appreciation, sometimes you don't.  The time it takes is not important, but getting home safely is.   Through your climb there are vista points, wildlife and ever changing scenery, even if you have hiked in the same place before.  Each round of chemo has brought these same twists and turns.  A few months ago I was taking additional time between rounds and told one of my nurses we were in the 'switch backs.'  Not being a hiker, she agreed  with the comparison upon me defining a switch back as proceeding down the mountain more slowly in the steep parts, so as to not get hurt.  

I have five rounds left on this chemo mountain.  We are no longer climbing but descending  have enjoyed the view and have had almost enough nature for this adventure.  I'm starting to see the signs of civilization, sprouts!  As I proceed carefully back, I am getting excited to be home and cautiously remembering the rules of the trail.

Started with this many

Then we had this many

And then we were at

Now we are here!!!

Best Weekend Ever

This weekend, I had to think about cancer for a total of three minutes!

On Friday morning, the results from my thursday blood work had not yet been released to me.  Before going to the Walk-a-Thon at my school, I wanted to make sure I was free to make as many laps and get as many hugs as I felt up to.  I called my nurse to find out my results, she cleared me and told me to wear sunscreen.  That was the three minutes, calling, being on hold and talking to my nurse about blood counts.

After applying copious amounts of SPF 85 and filling my camelback hydration pack with water I drove over to my school.  I've been to school a few times since I started treatment, but I was so excited to go for this special event, my heart was pounding as I drove up the hill to campus.  In the office I got my official Walk-a-Thon shirt, and decorated it to reflect where I am in my chemo process.

Then I looked out the window to where the kids were enjoying the barbecue lunch, and saw one of my students from last year, Maddie.  She was my entrance point, I snuck up with a big hug and together we went to find Morgan, another of my kids from last year.  By the time we located Morgan, all of thirty feet away, I felt like the Pied Piper, kids were swarming me.  My heart was throughly melted.  For the next ten minutes I was layered in hugs and high-fives from the part of my life I have missed most for the past ten months.  Nothing can is more powerful than an unsolicited hug from a child who genuinely cares for you, nothing.

The rest of the day was time well spent.  I reconnected with students and coworkers.  Many kids asked questions about when I would return to school or when my hair would come back.  My favorites were kids who just told me about something they had recently accomplished in school or asked me where their friend was, assuming I would know, because my being on campus was just so normal to them.  A few coworkers gave positive feedback about this blog, and even told me I inspired them.  Truly, I feel like I am just doing my job, all teachers inspire, I'm just doing it through a different outlet this year.  The kids signed my shirt and poured cups of water on each other as a way to beat the heat as the walked.  There was even a sighting of our local NHL star/parent, I did not drool too much.  To quote my friend Susanna, it was a little miracle.

Saturday we went to a baby naming for our friends Marcy and Levent.  Along with family, friends, our Chavu-rad and Rabbi Adam welcomed baby Derin.  I was very happy to be able to attend this important right of passage for our friends.  It was also a joy to meet other babies born to our Chavu-rad recently.  As Rabbi Adam will be relocating to the east coast in July, this may be the last formal event we see him at.  Adam has been a big support for me as I have gone through treatment, he is also a connector for Marcy and I has he conducted both of our weddings.  With Adam leaving, attending these events with our Chavu-rad has a new importance to me.  I look forward to keeping up the connections he has helped us form.

We were not yet done with fun!  Sunday  we went to a barbecue with the Chavu-rad, and the young adult group from Beth-Am.  It was the holiday Lag B'Omer, the half way point between Passover and Sukkot.  Basically, it is a good excuse to have a bbq and enjoy nice weather.  When it was brought to our attention that the Chavu-rad and the young adult group had both planned on have a bbq, forces were combined.  It was nice to meet new people, get to know Rabbi John a little better and enjoy more time with friends.  I also learned that deviled eggs are a little like crack to some people.

Its been about a year since Shac and I have been able to attend any events with our Chavu-rad, and this weekend just happened to line up with multiple events and my health cooperating.  In this time, there are three new baby boys, and another baby on the way.  When Rabbi Adam first got this group together two years ago, we were ten couples, recently married with one baby on the way.  Each couple has one Jewish partner and one who isn't or has converted, so Shac and I fit right in.  Like in any group we have made stronger connections with some couples than others.  I look forward to growing with our Chavu-rad and getting to know all of these little families.

Chemo starts again on Monday, glad I got to have so much fun before I go back on the meds.

Spring

It's baseball season!

The weather shifts between rainstorms and heat.  My husbands allergies are in full force.  I have a desire to be outside, trimming overgrown plants and making space for summer parties.  Spring is most definitely here.

A while back, someone suggested I needed to take more pictures.  Honestly, I don't feel like having my picture taken.  They suggested that I might want to be able to look back at my strength through this process, show my future generations or other people who might fight this fight as well.  So here are some pictures.  I can't remember who they are, but I think they might have been right.  

With spring this year comes changes in my chemo regime.  I have reached a lifetime limit of one of my medications Doxorubicin.  Doxo is one of my chemo meds that is light sensitive and was given to me over 48 hours.  Most chemo med dosages are based on weight. With every medication, the more of it a patient receives the higher the possibility of side effects gets higher and higher.  Doxo effects your heart.  Going over this threshold would change my possibility deteriorating the muscles around my heart from a 30 to 50 percent chance and then up to 70 percent.  Thanks, I'll pass!  So now instead of getting Doxo for 48 hours, I get Dactinomycin.  Dactin only takes five minutes to infuse, but treats the same element of cancer, tumors.  They gave me the Doxo first, because it is the exact medication used in the study my treatment plan is based on.

Yes, that is three hospital bands in one day.

Typical daily pills.

Between rounds ten and eleven, I started seeing a councilor.  What I am going through is not easy, and I am not only physically but emotionally effected by my treatment and the changes my body is going through.  So now I have four kinds of doctors appointments each week; counciling, my oncologist, infusion center for fluids and infusion center for blood work.  It is a full time job.

Ernie's new favorite spot to sit.

Emotionally, I am feeling better.  Physically, I am more worn out.  We all know I have trouble sitting still, but now I have no choice.  With all the chemicals in my brain, I have trouble concentrating.  Recently, my sisters best friend Sara sent me a jigsaw puzzle.  This was an excellent choice, as it isn't physically demanding and I can focus on it as long as my brain allows.  It isn't a TV show I have to keep up with, so there are no spoilers or a book I have to remember the plot and twists of.  I hope that when I am done with chemo I get my mind back though.

Chelsea got me a sweet kidney keychain!

Somehow, I feel like I skipped from ten rounds left to six rounds left and don't remember the in between.  I'm not complaining.  The end is coming.  There are sure to be more bumps and bruises along the way, but we are still moving forward.
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Tomorrow is National Nurses Day!  Never before have I even imagined such a thing exists or planned so diligently to celebrate something that is now profoundly important to me.  Every day and night, these men and women care for not only myself and new born babies, but cranky smelly people who don't appreciate them.  Regularly they deal with bodily fluids and people who aren't feeling their best.  I wouldn't trade with them for the world but appreciate everything they do for me.  Like today, when I showed up three hours early for my appointment because my brain is so full of chemo I can't think straight, they just fit me in.  Or on Saturday when my silly 'please don't wake the princess' note made instagram before I woke up in the hospital.  These men and women chose to care for the rest of us.  The least we can do is treat them with respect. So thank a nurse tomorrow!

Knowledge

"And I know things now,
many valuable things,
that I hadn't known before.

And though scary is exciting,
nice is different than good.

Isn't it nice to know a lot,
and a little bit, not."
--"I know things now", from Stephen Sondheim's Into the Woods

As I sit in the infusion center getting fluids to protect my kidney, I over hear the nurses discussing a patients orders.
Nurse T to Nurse J, "Why is it a stat order on this blood panel?"
Nurse J, "That's unusual."
Me, "I'm coming in at eight thirty tomorrow morning.  If I need blood, they want to make sure the orders are processed in time for the blood bank to process it for my early appointment tomorrow."
Nurse T, "Oh, that makes sense, thanks Wendy."
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Ten months ago what I knew about cancer and hospital jargon was anecdotal.  Recently, people watching me go through this process have suggested I become a nurse after I finish treatment.  No.  I do not enjoy bodily fluids, that's why I don't teach kindergarten.  The knowledge I have gained about my treatment and subsequent hospital-isms astounds me.  I can interpret my own blood work, explain unusual orders to my nurses, change the settings on the pump that pushes fluids into my port (though I don't), and I laugh hospital humor.  What good with this knowledge do me in 'real life?' No idea, but in my current state, it is quite helpful.

Along with this information comes too much information.  My care team is large, though I have a primary oncologist, I see a team of six doctors on rotation in the hospital, 20 nurses and different nurses at each infusion center.  On top of which, there are the insurance company people, receptionists, and my amazing support system of family and friends.  I am constantly inundated with getting new information and in my efforts to be a good patient, and make it easier for my medical team, I am trying my best to follow all of the instructions and suggestions.  Sometimes the information contradicts, other times it is hearsay.  It has been challenging to process all of this info, I need help to interpret it all correctly.

Recently, I've felt quite overwhelmed with the amount of work I have to do.  Between chemo rounds, I now go to the infusion center at least twice a week (this week every day) for fluids and blood work. When you are exhausted and trying to feel better, you need time to rest, and I can't rest being at the doctor each day.  Coupled with necessary changes to my daily routine, diet, social life, it is really starting to take its toll on me.

With my new knowledge, work load, and treatment fatigue it is just getting more challenging. It has been an emotional round.  Heck, what I am going through isn't easy, I didn't expect it to be.  There have always been and will continue to be unexpected changes to my treatment and schedule.    My sister wisely reminds me that they say 'practicing medicine' as it is something different for each specific patient and case.  I try to be as patient and understanding as I can be, but it is a lot to take on.  

Round ten has been an informative round.  Challenging both physically and emotionally.  The time I spend between chemo sessions will need to get longer to protect my kidney (Reggie) and allow my bone marrow to replenish my blood.  Shac helped me realize that my goal isn't to finish treatment as fast as possible, but to preserve my health for the rest of my life.  It is a learning process.  Moving through this slowly is still progress.

Ferris Bueller

Two important things have happened since my last post.

My sister got married!  and I got to go!  This is an unusual second in our lives.  My sister, being two years older, had all of the firsts in our lives, first car, first to college, first to try things out so I learned how to navigate them better (thanks).  Our weddings however, were in reverse order, mine to Shac being nearly two years ago.  My dad said my sisters was easier on him emotionally because of this.  It was the first first I had first. 

Their wedding reflected Lauren and Jason's personalities to a T and I am so happy I could share the day with them.  They had such a 'Southern California' wedding to me.  Steps from the beach, and 80 degrees in March.  The ceremony was outside on a patio, dinner being inside a 1930's casino once frequented by the likes of Mickey Rooney and Judy Garland.  The flowers were beautiful and cupcakes moist and delicious.  This was the first time I got to see their local band 'The Creepers,' who I think Shac and I appreciated more than my grandparents, but maybe we just knew their music better.  So glad I was feeling up to having as much fun as I did.

If you look closely at this picture you can see my eyelashes and eyebrows!  I had a wonderful makeup artist at Aveda in the Mission Viejo mall.  She too a cancer survivor, made me feel pretty for the first time in months. I know it was my sisters day, but I was so excited to be pretty and share that her.  I didn't want to be the weird looking one sticking out at her wedding, pictures last forever.  I felt so much better looking normal.  It seems vain to me, but I think it is ok to want to look your best, it does amazing things for your self confidence.  Perhaps the fact I felt like I looked so good allowed me to physically feel better too.

The second thing that happened was chemo mountain!
I'm at the top.  Well, I am actually stepping down as the day we got back from the wedding I went into the hospital to complete round nine.  So here I sit between rounds nine and ten!  Round nine was pretty typical for my short round, three days of chemo,  two bags of blood, left the hospital feeling good with minimal side effects.

The week before the wedding I had all of my midway scans.  The ultrasound of my kidney came up as 'medically unremarkable' you may remember reading.  Next I had a PET scan, this shows how things move and group, specifically in your blood.  The PET scan showed changes in my bone marrow, expected due to how chemo is effecting my blood.  Long story short, my PET scan came back clear!  No accumulations of cancerous cells.  SEVEN MONTHS CANCER FREE.

Your blood is an interesting thing.  I'm only now learning about how your body makes blood, and it is fascinating.  My bone marrow isn't reproducing as quickly as it should, and is not producing hematocrit, a blood transporter, very fast either.  Chemo is supposed to effect my blood production, so this all sounds like bad news, but it means it is working.  It also explains why I've been so anemic and my body can't keep up with blood production.  Learning all of this actually took a lot of pressure off me.  For the past seven months I've been getting more and more anemic.  Here I sat thinking there was something I could do or eat to help my blood.  Nope.  It is so nice to know its not me!

For each post I try to come up with a clever title or theme.  This time it was hard, such diverse things going on!  Often I've said chemo waits for no man.  I don't want to use the blog as a place to complain about what I'm going through, just a place to inform.  Life has continued to move forward with or without cancer.  In November we had to replace a sewer pipe, February my grandfather passed away, in March my sister got married.  I still have at least five months of chemo, who knows what else the universe will throw at us in that time span.  So, in the immortal words of Ferris Bueller, "Life moves pretty fast.  If you don't stop and look around once in a while, you could miss it."