You’re a small kid in Sydney
And the circus is coming to town
And you’re really excited
Because you get to meet the ringmaster!
Even though you haven’t met before
He’s an old family friend
Because his mom knew your Abuelo
From when she served in the Women’s Army Corps and was stationed in Manilla
 
Dinny The Ringmaster
Is one of the coolest people you have ever met
He is American and very tall and he does magic
“Make us fly Dinny!” we begged.
“The magic only works at the circus,” he said with a knowing twinkle in his eye.
It was a special treat to go to the circus
We were still small enough to need a nap
We had to sleep beforehand, or we weren’t allowed to go
 
My memories are blurry now
But I have sense of overwhelming happiness when I think back to that time
It was exciting, and fun
And having the ringmaster to dinner at our house was very glamorous
 
Twenty-odd years later
You reconnect on facebook
And promise to meet if you have ever happen to be in the same city
 
This week it happened
A call out of the blue
“Luisa, it’s Dinny! I’m in New York!”
And you squeal with delight
The circus is back!
Well, not the whole circus 
The daredevil clown with the giant hair
Bello Nock with Bello Mania! 
And Dinny is the MC
 
You get to go to the dress rehearsal
At the New Victory Theatre
The tech tables are still set up in the back
And even though you’re one of about 15 people in the audience
You have one of the best nights of theatre you’ve had in forever
You never stop laughing
The joy of the clown
The delight of the magic
The adrenalin from watching a grown man bicycle across a tight rope
Or climb a pole that reaches almost to the ceiling, and stand on an impossibly tiny box at the top of it to retrieve an errant red balloon
Which, once descended from the heights, he hands to you with a grin
And you’re not a 31-year-old cancer survivor living in New York
You’re five years old
And the world is magical and full of whimsy and delight
 
And you re-meet Dinny
And he is every bit as wonderful and fun as you remember
And you sit and chat for a bit in the green room
And you feel light and happy
And the next day, you’re still floating because
The circus made you fly. 

Today we get to celebrate
The birth of 
The best person I know

​He’s intelligent and funny
Kind-hearted and hard working
Patient and loving
Wise beyond his years
 
We fell in love under shooting stars
He bought me strawberries and chevre
And we picnicked on the lawn
We quoted Monty Python and Tolle and 10 things
He sent me a mix-iPod
 
We skyped every single day we were apart
Waited nearly a full year for the visa
And in that time, he was patient and present
And unwavering
 
When I got sick
He was patient and present and kind and loving
And despite the nausea and fatigue and depression and general grossness that is cancer
He never stopped being patient and present and kind and loving

Being married to him is even better than I’d imagined
I get to wake up every day with this amazing person
And share a home that is happy and safe and warm and fun 

​I love watching him teach, his seemingly effortless Socratic style
I love watching him rig lights atop a ladder 
I love watching him angry-type when he’s arguing a point on facebook
He loves a good debate
He's not actually angry, just passionate 
I love that he listens with compassion
Wants to educate, but isn't afraid to learn 
I love that he celebrates my nerdery
Because he’s a massive nerd too
I love that he can now quote Hamilton better than I can
 
He loves a good meal
He’s a wonderful chef
Roast duck, pho from scratch, rice paper wraps, steaks
He makes the best damn grilled cheese

He has a wonderful tribe
Blood and chosen, his people are loving, supportive, fun
If Papa Jesse is his twin, I’m totally ok with who Aaron will be in thirty years
Even with the love of horror movies
 
He always messages when he gets there safe
He always messages when he’s on his way home
He tells me, and shows me, he loves me
Every. Single. Day.
 
He is my best friend
My lover
My husband
ADR
 
I’m so lucky I get to share a life with you
I love you forever and always and to infinity and back
Celebrating you is my favorite holiday (they should make it a holiday. Working on your birthday is the worst!) 
Happy birthday my love.

There's a little boy, maybe seven or eight, with a sweet and inquisitive face. He's one of those bright kids that given half a chance could be brilliant. Right now, he's restless and bored. These long trips home on the subway are interminable. If only he had something to do.

His mother is exhausted. Exhausted in life and exhausted by him. Why won't he just sit still and be good like his sister? The good child is fast asleep in her lap. The mother leans her head back and closes her eyes. 

The boy sees his mother is dozing. He must not make any noise. He stands and faces her, checking to see if she is really asleep or just pretending. Her eyes remain closed. Between her feet on the floor is her backpack. He thinks there maybe something fun in it. A book? A snack? He carefully reaches into the bag. Just when he thinks he has got something, his mother's eyes flick open.

"GET BACK TO YOUR SEAT," she hisses. "You're gonna to get it when we get home." 

The boy sits back down, watching her face the whole time. Will she hit him here?

A group of older boys gets on the train. They are tall. They swagger. They stand in the middle of the carriage. One boy calls out,  

"What time is it?" 

The group responds,

"Show time!"

The little boy is immediately enthralled.

"Mama, it's showtime!"

She glares at him, resumes her nap.
​
One by one, the boys perform flips and jumps using the handrails and poles. In between, they do tricks with their baseball caps, seamlessly flipping them up and down their arms and back onto their heads. The boys are noisy. They are brash. They are brilliant. No one tells them to be quiet and sit down.

The little boy stares. He could be one of them one day, if they showed him how. He sits up a little taller when they come by with a hat asking for donations. If only he could drop some money, even just a dollar bill, into the hat. Then they'd notice him, maybe even make him a part of their troupe. 

"Mama," he says. Through half-closed eyelids, she snarls at him to be quiet. 

Well, I'm soaked to the bone
But I ran in Central Park!
I'm a New Yorker!

It may have been raining
Close to pouring actually, 
But my new running buddies were lovely
Let me go at my pace and pushed me too
We're conquering cancer 
Training in the Ulman Cancer Fund's
Cancer to 5km program

The best part was the trees
Magnolias! Blossoms!
And the flowers
Jonquils! Daffodils!
It's so damn glorious

The start of spring
The start of a new training season
I completed 12 weeks of the last one
Only for the hemogoblin goblin
To take residence 
Right before race day
Will I make it this time?

Feeling a part of 
The community of runners
Out on a day like today, insane and
Glorious too
Look at us, out in the rain! 

It has been so hard
The struggle, is most definitely,
Absolutely real
But today was a good day and
​My heart sings. 

It was the year of convalescence and healing
Depression and frustration
Fingernails falling off one-by-one, losing my eyelashes, nausea, fatigue, hand foot syndrome, thyroiditis, migraines, mood swings, menopause, depression, weight gain, reflux, the hemoglobin goblin, scanxiety and my hair growing back curly 
I spent most of the first four months of the year curled up on the couch
Riding out the symptoms, writing, reading, watching, scrolling endlessly through facebook and twitter and instagram
Short walks to the end of the block, to the store if I was feeling really adventurous, wearing that stuffy mask and trying to be patient with strangers who asked “Why are you wearing that?”
Their fear and pitying stare when you reply, 
“I’m recovering from cancer.”

By April I could walk to the park
I fell in love with spring in New York 
The magnolias and the blossoms and the blue of the sky 
We celebrated Aaron’s 30th with games and good food 
I started learning to play the piano
I found an incredible mentor through Imerman’s Angels 
I signed up for online courses in poetry and songwriting 

In May I was depressed and angry
I couldn’t go to camp
I wept and wailed and railed against the unfairness of this stupid disease and its long recovery 
It took a month to find a counselor who accepted our insurance and dealt with cancer
I found CancerCare and signed up for their summer young adult survivor support group 
I was allowed out into the world
We had our first date in almost a year - we rode the subway to Prospect Park and ate dinner at  Purple Yam 
My first subway trip to the city on my own was to go to the support group

​In June I finally got to go shows again 
We saw Ever After at the Paper Mill Playhouse 
In the second half of the year, I made up for a year of not seeing anything and saw 44 shows, including the Into the Woods Original Cast Reunion at BAM, On the Town, Spring Awakening, The King and I, and Invisible Thread. I saw the Drama League Gala for Bernadette Peters.
One of my poems was published in StepAway magazine 

In July I visited camp 
We had cancerversary dinner in Connecticut and marveled at the year that had been
I met Patti LuPone and thanked her for being so lovely
I stayed with my friend in Connecticut and was treated like royalty 

In August I started training for the Cancer to 5km
I got a job at BAM 
I had an article published on the CancerCare website 
I became a member of the New York Public Library 

In September I started working for a friend’s business in wedding planning
Aaron and I sailed down the Hudson at sunset 
I traveled to Australia for the first time in four and a half years
I dealt with all my crap in storage. I wanted to burn everything I had ever owned (I didn’t. I gave most of it away, bought two suitcases back to New York, and threw the rest away). 
I saw friends and family. 
We said goodbye to my beautiful Abuela. 

In October my counts started dropping. The hemoglobin goblin took up residence and didn’t leave for three months. 
After training for twelve weeks, two days before the 5km, I had to drop out because my counts were too low. 
I temped across offices in Manhattan: finance, office management, office supplies, health insurance, media, and even the temp agency itself. 
I had an article published on the Greenroom blog of New Musical Theatre 
I went trick o’ treating for the first time 
I had my one year post-transplant check-up and tests 
My immune system was still not functioning at normal levels 
I had developed osteopenia (the pre-cursor to osteoporosis)  
But the main test: still in remission 

In November 
My friend Zaza came to stay
I had my first proper Thanksgiving complete with family and turkey and flan 

In December I battled a cold and a stomach bug 
We celebrated cousin Louisa’s first birthday
And the next day, said goodbye to Jake
We ate Chinese in Park Slope on Christmas Day 
Then it was time to drive down to Virginia to spend time with Aaron’s parents 
And bring in the new year 

Over the course of the year 
I researched and posted 18 movie musicals from 1929 (with a few more in the pipeline) 
I watched filmed live musicals online including Follies (awful - the quality, not the show) and Daddy Long Legs (brilliant) 
I learnt Spanish, Danish, French, and Italian on duolingo 
We battled armies of cockroaches and one solitary mouse 
We made ice cream, yogurt, rice paper wraps, pho, mussels in a creamy white sauce, meringues from chickpea brine, and dumplings dumplings dumplings galore 
Aaron started our herb garden with basil and rosemary and mint
Friends from Australia, Canada, England, and Sweden visited New York 

It was a year of struggle
A year of pain and depression
A year of one moment, one day at a time 
A year of monitoring and checking in and letting go of expectations of a speedy recovery 
A year of wonderful friends and family and uncountable kindnesses and generosity 
Into 2016 we go
With hope it will be better, easier, kinder, more gentle 
May the year be happy, healthy, and well
​The end (for now). 

Scanxiety ("scan-zi-etee") 
Anxiety and worry that accompanies the period of time before undergoing or receiving the results of a medical examination" ​

Remember that scene in Kindergarten Cop where Arnie says, "I have a headache," and the kids say, "Maybe it's a tumor..." and Arnie replies, "It is not a toomah!" That is the conversation in my head right now. 
 
​When I sit for too long on any chair that isn't my couch, I develop an awful pain right down in the base of my tailbone. It makes moving to a standing position incredibly painful. Once I'm standing again, the pain subsides.

My doctor thinks it could be a fractured sacrum, except we have no idea what could have caused it (apart from the fact that the treatment for AML has left me at higher risk for bone damage). All I know is that the pain started after the bone marrow biopsy in October. 

Tomorrow I'm having an MRI to determine what's causing the pain. According to the hospital Information Sheet, the MRI will be conducted with contrast dye, in order to "be able to better see any traces of disease".

Basically I'm going to be spending the next 24 hours dealing with scanxiety and repeating to myself in mantra-like fashion: IT IS NOT A TUMOR. ​

Something is messing with my blood. My medical team are not exactly sure what it is. So, for the time being, I've decided it's a goblin -- because it's a gobblin' my hemaglobin, and that sounds more fun than "cancer". 

Those of you following along for the past few weeks will know that my counts have jumping up and down like a yo-yo. It started after my one-year-post-transplant check-up — I couldn’t seem to recover from the day of tests. I was constantly tired, headachey, and puffed out from shorts bursts of walking, and as a result I had to drop out of the 5km run which I’d spent 12 weeks training for. 

My blood work showed that my hemoglobin (an important component of red blood cells), levels were dropping. My doctor thought it was caused by one of the drugs I was on, and took me off the drug. To keep an eye on the counts, I had to go back to having weekly blood tests. 

Four weeks after stopping the suspected culprit, my counts are still dropping. This afternoon my lovely nurse practitioner called to let me know that this week’s results were low enough that I’ll need another bone marrow biopsy on Monday, and possibly a transfusion. My doctor is not too concerned about a relapse at this point, given that my last biopsy was only a month ago and came back completely clean, but she’s not exactly sure why I’ve stopped producing hemoglobin. 

Monday will be my 11th bone marrow biopsy in 16 months. I still have pain from the last one - whenever I sit for too long I get a sharp and uncomfortable pain in my tailbone. It’s alleviated by standing and walking, but, thanks to the low hemoglobin counts, I get tired from too much movement. It’s a fun game of balancing pain and fatigue. 

Thankfully it hasn’t been too debilitating. I’m not bed-ridden, and I’ve even managed a few days of work this week! ​It's just frustrating to be feeling exhausted and headachey all the time. 

I’m hoping my medical team are able to figure out what’s causing this current dip from the biopsy. In the meantime, hemoglobin goblin, be gone! ​