- Published on
luminescence: the emission of light by a substance that has not been heated.
LuMinEssence: the mission of finding light in the dark.
Cancer Survivorship
The annual survivorship check-up
There’s always a twinge of worry
That this will be the appointment
Where they tell you it’s back
But your counts are good!
There are no niggles
No pressing issues
A clean bill of health
A sigh of relief
How strange it is
To feel good.
There’s always a twinge of worry
That this will be the appointment
Where they tell you it’s back
But your counts are good!
There are no niggles
No pressing issues
A clean bill of health
A sigh of relief
How strange it is
To feel good.
- Published on
luminescence: the emission of light by a substance that has not been heated.
LuMinEssence: the mission of finding light in the dark.
The Phlebotomist
The phlebotomist
Was once in marketing
And then became a trainer
And then a medical tech
And now they’re going to nursing school
People who have lived life
Done things
Tried things
Who can greet you with
Humility and warmth
Because they’ve seen a lot
And done a lot
And are doing the work
To figure out
Who they want to be
It makes for great conversation
While they draw your blood
Was once in marketing
And then became a trainer
And then a medical tech
And now they’re going to nursing school
People who have lived life
Done things
Tried things
Who can greet you with
Humility and warmth
Because they’ve seen a lot
And done a lot
And are doing the work
To figure out
Who they want to be
It makes for great conversation
While they draw your blood
- Published on
Luminescence: the emission of light by a substance that has not been heated.
LuMinEssence: the mission of finding light in the dark.
BC/AC
Today
In my acting job
Where I play a fake patient
To help train student doctors
I was diagnosed with cancer four times
By students learning
How to deliver bad news
For the first time
It was exhausting
And emotional
And strangely cathartic
Being here now
Giving real life feedback
This is what it's like when you first hear the word cancer
This is what it's like to hear lots of medical jargon
This is how much it means when the person delivering the worst news
Connects with you as a human being
The emergency room doctor
In New Milford Hospital who said to me
After the first round of what would be
Endless blood work
You're going to start to hear the word "cancer"
He was direct
But he was kind
I think of the family and friends
I've lost to stupid fucking cancer
Four in the past year alone
Ruth, Erin, Miren, Miguel
It's a club we never wanted to be part of
But once you're in
You're in
Life becomes B.C. and A.C.
Before Cancer
After Cancer
And today
I can feel thankful
That I survived
And even though I won't become a nurse
Or a doctor
I can give something back
So that the next person
Who has to be told
You're going to start to hear the word cancer
Will be met with humanity.
In my acting job
Where I play a fake patient
To help train student doctors
I was diagnosed with cancer four times
By students learning
How to deliver bad news
For the first time
It was exhausting
And emotional
And strangely cathartic
Being here now
Giving real life feedback
This is what it's like when you first hear the word cancer
This is what it's like to hear lots of medical jargon
This is how much it means when the person delivering the worst news
Connects with you as a human being
The emergency room doctor
In New Milford Hospital who said to me
After the first round of what would be
Endless blood work
You're going to start to hear the word "cancer"
He was direct
But he was kind
I think of the family and friends
I've lost to stupid fucking cancer
Four in the past year alone
Ruth, Erin, Miren, Miguel
It's a club we never wanted to be part of
But once you're in
You're in
Life becomes B.C. and A.C.
Before Cancer
After Cancer
And today
I can feel thankful
That I survived
And even though I won't become a nurse
Or a doctor
I can give something back
So that the next person
Who has to be told
You're going to start to hear the word cancer
Will be met with humanity.
- Published on
I feel disappointment so keenly
And like I’ve been robbed of the past several years
First it was cancer and then recovery
And just I was really starting to feel myself
Feel "normal" and able to do the thing
The pandemic hit
And it was all taken away again
And I don't feel safe to be in the room any more
Because the world is on fire
And the people in charge keep handing out matches and lighters and kerosene cocktails
And then I came back to do theatre in the woods
And oh my god it felt so good to have a script in my hands
To be sharing the love of musical theatre with a new generation of kids
And then I had to work with someone whose skills did not match what was on their resume
They could not do the thing
And it was disappointing and frustrating because it curtailed the process
And it made it harder for the kids
And it wasn't until he quit, mid-rehearsal, in front of a room full of campers and staff
That it was made better
But in between we sat on the stage at the veggie patch
And did accent work
We drilled melodies and harmonies and rhythms and words
We talked about the meaning and hidden meanings of the words
We talked about intention and making ourselves heard
We learnt choreography and blocking
And on the hottest day of the summer (so far) the show happened
And it was a relief and it was exciting and it was swelteringly hot
And I got to wave my arms in front of a band
Which was scary and challenging and unbelievably fun
And at the end the theatre crew descended onto the stage and started drilling and ripping and carrying bits of the set away to make space for the next show and
I felt intensely sad because I didn't want it to be over
But I helped pack the van with the music stands and chairs and the drum kit
And went up the hill to unpack the van with the music stands and chairs and the drum kit
And by the time I got back to the dining hall
The cast party was over and the kids had been taken to their bunks
And I didn't get to say good night or well done or I'm so proud of the work you've done and
I felt a rush of grief because it all had been taken away again
And all I could do was sob
And then two nights later
Reminiscing about eight years before
When organic-vegetarian-regularly-exercising-meditating-rarely-drinking-29 year old-me was told
You have leukemia.
You will be dead in a month if you don’t have treatment.
And then all that happened
And today, eight years later, I feel relief
I feel scared it will come back and it everything will be taken away again
I feel thankful I was where I was when it happened
The best place for the worst thing to happen
I feel joy that I can sing
I feel joy that I can play flute
And that I’m learning to play the piano
I feel joy that I can read music
I feel joy that I can read at all
That I can form words
That I can be back in the woods
Even when it is hard
Even when it is disappointing
I am here.
And like I’ve been robbed of the past several years
First it was cancer and then recovery
And just I was really starting to feel myself
Feel "normal" and able to do the thing
The pandemic hit
And it was all taken away again
And I don't feel safe to be in the room any more
Because the world is on fire
And the people in charge keep handing out matches and lighters and kerosene cocktails
And then I came back to do theatre in the woods
And oh my god it felt so good to have a script in my hands
To be sharing the love of musical theatre with a new generation of kids
And then I had to work with someone whose skills did not match what was on their resume
They could not do the thing
And it was disappointing and frustrating because it curtailed the process
And it made it harder for the kids
And it wasn't until he quit, mid-rehearsal, in front of a room full of campers and staff
That it was made better
But in between we sat on the stage at the veggie patch
And did accent work
We drilled melodies and harmonies and rhythms and words
We talked about the meaning and hidden meanings of the words
We talked about intention and making ourselves heard
We learnt choreography and blocking
And on the hottest day of the summer (so far) the show happened
And it was a relief and it was exciting and it was swelteringly hot
And I got to wave my arms in front of a band
Which was scary and challenging and unbelievably fun
And at the end the theatre crew descended onto the stage and started drilling and ripping and carrying bits of the set away to make space for the next show and
I felt intensely sad because I didn't want it to be over
But I helped pack the van with the music stands and chairs and the drum kit
And went up the hill to unpack the van with the music stands and chairs and the drum kit
And by the time I got back to the dining hall
The cast party was over and the kids had been taken to their bunks
And I didn't get to say good night or well done or I'm so proud of the work you've done and
I felt a rush of grief because it all had been taken away again
And all I could do was sob
And then two nights later
Reminiscing about eight years before
When organic-vegetarian-regularly-exercising-meditating-rarely-drinking-29 year old-me was told
You have leukemia.
You will be dead in a month if you don’t have treatment.
And then all that happened
And today, eight years later, I feel relief
I feel scared it will come back and it everything will be taken away again
I feel thankful I was where I was when it happened
The best place for the worst thing to happen
I feel joy that I can sing
I feel joy that I can play flute
And that I’m learning to play the piano
I feel joy that I can read music
I feel joy that I can read at all
That I can form words
That I can be back in the woods
Even when it is hard
Even when it is disappointing
I am here.
- Published on
Today is seven years since I was diagnosed with
Acute myeloid leukemia
It feels like much longer
It was a lifetime ago
In New Milford Hospital
When the emergency room doctor looked at me said
You’re going to start to hear the word “cancer”
And I think I laughed at him
And I think I said out loud
“You have the wrong patient
I’m a non-smoking organic eating vegetarian who exercises and meditates
*I* don’t have cancer”
I did have cancer
A blood cancer that more commonly affects men in their sixties
And has a survival rate beyond 5 years of about 25%
I was 29. I was supposed to be working at camp
Vocal directing RENT
No day but today…
Healthy organic me was like
“I don’t want chemo, that’s toxic”
And the oncologist looked me in the eye and said
“You’ll be dead in a month”
So I did the chemo
And the radiation
And they wiped my immune system
And injected my sister’s stem cells into my port
And I spent a year fetal on the couch
And I wasn’t allowed take-out
And I wasn’t allowed to ride the subway
And I wasn’t allowed to go to the theatre
And my fingernails fell off one by one
And I lost all my hair (though I actually quite liked that part)
And my teeth went to shit
And I went into menopause
And I felt fury and rage and despair
And I felt love from all around the world
And somehow, somewhere
Life stopped being appointments
And blood work and blood counts
And wondering when I was going to feel “normal” again
It became about living in New York (and then New Jersey)
I ran a bit
5 marathons and 3 half-marathons (but who's counting?!)
We visited Maine, California, and North Carolina
Honeymooned in Guana
I worked on Broadway
Wrote and performed a cabaret
Joined a chorus
(happiness is singing in the choir)
Performed at Carnegie Hall, Alice Tully Hall, and Battery Park
Played a citizen in Alita
I even played a fake patient and
Built the Filmed Live Musicals database
Covid was triggering
I felt like I’d already done it
The isolation, careful hand washing, fear of infection
The random unexplainable symptoms
Reading accounts of covid was like reading through my recovery
Exhausting
Seven years on I still deal with side effects
Every headache that lasts a little too long
Every bout of fatigue
Every time something is a little off
The fear that...
But I’m ok
I get to be with Aaron
We bought a house
We got a puppy -
Voltaire
Even when he’s literally chewing the walls or waking up at 5am and refusing to settle even when he’s fed and watered and pooped in all the senses of the word
He’s truly the best of all possible puppies
And Aaron is the best of all possible humans
Kind and patient and loving
I’m singing
I’m dancing
I'm writing
I’m learning to play piano
I'm learning to drive! On the right side of the road!
I'm exercising
I'm teaching
I'm remembering to breathe
I’m here.
Acute myeloid leukemia
It feels like much longer
It was a lifetime ago
In New Milford Hospital
When the emergency room doctor looked at me said
You’re going to start to hear the word “cancer”
And I think I laughed at him
And I think I said out loud
“You have the wrong patient
I’m a non-smoking organic eating vegetarian who exercises and meditates
*I* don’t have cancer”
I did have cancer
A blood cancer that more commonly affects men in their sixties
And has a survival rate beyond 5 years of about 25%
I was 29. I was supposed to be working at camp
Vocal directing RENT
No day but today…
Healthy organic me was like
“I don’t want chemo, that’s toxic”
And the oncologist looked me in the eye and said
“You’ll be dead in a month”
So I did the chemo
And the radiation
And they wiped my immune system
And injected my sister’s stem cells into my port
And I spent a year fetal on the couch
And I wasn’t allowed take-out
And I wasn’t allowed to ride the subway
And I wasn’t allowed to go to the theatre
And my fingernails fell off one by one
And I lost all my hair (though I actually quite liked that part)
And my teeth went to shit
And I went into menopause
And I felt fury and rage and despair
And I felt love from all around the world
And somehow, somewhere
Life stopped being appointments
And blood work and blood counts
And wondering when I was going to feel “normal” again
It became about living in New York (and then New Jersey)
I ran a bit
5 marathons and 3 half-marathons (but who's counting?!)
We visited Maine, California, and North Carolina
Honeymooned in Guana
I worked on Broadway
Wrote and performed a cabaret
Joined a chorus
(happiness is singing in the choir)
Performed at Carnegie Hall, Alice Tully Hall, and Battery Park
Played a citizen in Alita
I even played a fake patient and
Built the Filmed Live Musicals database
Covid was triggering
I felt like I’d already done it
The isolation, careful hand washing, fear of infection
The random unexplainable symptoms
Reading accounts of covid was like reading through my recovery
Exhausting
Seven years on I still deal with side effects
Every headache that lasts a little too long
Every bout of fatigue
Every time something is a little off
The fear that...
But I’m ok
I get to be with Aaron
We bought a house
We got a puppy -
Voltaire
Even when he’s literally chewing the walls or waking up at 5am and refusing to settle even when he’s fed and watered and pooped in all the senses of the word
He’s truly the best of all possible puppies
And Aaron is the best of all possible humans
Kind and patient and loving
I’m singing
I’m dancing
I'm writing
I’m learning to play piano
I'm learning to drive! On the right side of the road!
I'm exercising
I'm teaching
I'm remembering to breathe
I’m here.
- Published on
I'm tired
I'm overwhelmed by the fuckery
I'm tired of the othering and excluding and denying
I'm tired of American exceptionalism and America being the best at being the worst
Of broken bureaucracy and horrendous healthcare and guns and a never ending stream of violence
I'm tired of the pandemic
I want to go back to before
I want everything to change yesterday
I never want to deal with NJ Transit again
I want better options
I love our quiet town
I hate that it's bound by freeway and surrounded by ugly industry and full of literal trash that blows into our yard and is an eyesore and a risk for our dog
I'm tired of throw away culture
I'm tired of social media
I hate that the industry I worked so hard for
Dreamt so long about
Is toxic and vile and truly only accessible to the wealthy few
I'm tired of being scared I'm going to relapse
I'm tired of being afraid I'll end up back in hospital and this time alone
I'm tired of selfish fuckery and half the country ignoring, refusing to believe in, or understand science
I'm tired of people who don't wear masks or don't wear them properly
I'm tired of ignorance
I'm tired of bigotry and misogyny and the patriarchy
I'm tired of think pieces and opinion pieces and influencers
I'm tired of Hollywood
I'm tired of mirage and smoke and mirrors and pretense and illusion
I'm tired of celebrity
I'm tired of kindness being the exception
I'm tired of what is right being what is hard
I'm tired of banging my head against the wall because it doesn't have to be this way
I'm overwhelmed by the fuckery
I'm tired of the othering and excluding and denying
I'm tired of American exceptionalism and America being the best at being the worst
Of broken bureaucracy and horrendous healthcare and guns and a never ending stream of violence
I'm tired of the pandemic
I want to go back to before
I want everything to change yesterday
I never want to deal with NJ Transit again
I want better options
I love our quiet town
I hate that it's bound by freeway and surrounded by ugly industry and full of literal trash that blows into our yard and is an eyesore and a risk for our dog
I'm tired of throw away culture
I'm tired of social media
I hate that the industry I worked so hard for
Dreamt so long about
Is toxic and vile and truly only accessible to the wealthy few
I'm tired of being scared I'm going to relapse
I'm tired of being afraid I'll end up back in hospital and this time alone
I'm tired of selfish fuckery and half the country ignoring, refusing to believe in, or understand science
I'm tired of people who don't wear masks or don't wear them properly
I'm tired of ignorance
I'm tired of bigotry and misogyny and the patriarchy
I'm tired of think pieces and opinion pieces and influencers
I'm tired of Hollywood
I'm tired of mirage and smoke and mirrors and pretense and illusion
I'm tired of celebrity
I'm tired of kindness being the exception
I'm tired of what is right being what is hard
I'm tired of banging my head against the wall because it doesn't have to be this way
- Published on
In previous years
The lead up to the anniversary of my transplant
Has been emotional
And hard
I have felt robbed
Taken away from myself
Frustrated that I have this anniversary at all
This year
I’m too busy to be thinking about
Stupid Cancer
On the morning of the 5th anniversary of
Having my sister’s T-depleted stem cells
Injected into my port
I’m rushing to the Jacob Javits Convention Center
To pick up my race bib
Number 65800
(How fast do I have to be before I can get 24601?!)
Collect my t-shirt
Over to the Fred’s Team table
Friendly faces
Up to rehearsal at Ripley Grier
Spend the morning singing
Dancing
Running lines
In the afternoon the director starts rehearsal with a question
Who has a New York story?
I have a New York story
Five years ago today
Halloween. Hospital.
Stem cell transplant
Life/death
Here we are
On Friday
It is an honor and a thrill
To walk in the NYC Marathon Opening Ceremony
As a part of Team MovedMe
26 inspiring runners representing 53,000+, including
Yvette, who had been told as a child she would never walk again after being hit by car who is now a retired 26-year army vet running her 18th marathon,
Natasha, completing the Abbott World Marathon Major Six-Star in memory of her sister
Issac, a trans person representing Front Runners New York, and
A leukemia survivor running her 5th marathon on the 5th anniversary of her stem cell transplant
Walking over the Finish Line
Keep the emotions under control
Save it for Sunday
Saturday night
Italian for dinner
Hot date with my love
Traipsing the streets of NYC
To get new iron-on letters for my shirt
Thank goodness for daylight savings
Race day
Up at 4am
A&D cream to prevent chafing
Under arms, under boobs, inner thighs
Soles of feet and between the toes
Sunscreen
Sports bra, shirt, leggings, socks, shoes
Belt with dates, gels, phone charger, earphones, ID, and a bank card just in case
Meet the Team MovedMe bus at 51st between 6th and 7th
Everyone is shivering in the cold
Wishing for coffee
We board the bus
Head down through midtown
Past Times Square where Fred’s Team is gathered
I wish I could be in two places at once
I sleep
We arrive at Fort Wadsworth, Staten Island
The police are lovely
A security guard yells in my face
Your bib needs to be on! Stop! Don’t move!
But almost no one has them on yet
We’re saving them from being crinkled
I try not to be rude to her
She’s been up since god knows when
She’s just doing her job
She’s going to have a long day
Samantha from New York Road Runners leads us to the
Broadcast and Media Tent
Heated, and stocked with bagels and pastries and fresh fruit
The sun rises behind the Verrazano Bridge
Revealing a pale blue sky
The mercury promises not to climb too much
Perfect conditions for a nice long run
Our bags are collected
We hear the canon
The professionals are off
They’ll be almost done before we’ve even started
We are led to the corral
Extra layers are stripped off
Tossed in the giant blue bins to be taken to charity stores around the city
Christy Altomere sings the national anthem
Normally I get teary
But I’m too nervous/excited/emotional about running to get emotional about the anthem
We are called to the start line
Inch forward
On your marks
The canon fires
Frank Sinatra croons
It’s up to you
New York, New York!
We’re off
I’ve only ever run on the lower level of the bridge
Wave 1 runs on top
I thought I’d be afraid of the height
I don’t even register it
The views are stunning
The dark blue of the Lower and Upper bays
Against the pale blue of the sky
Manhattan to the left
Brooklyn to the right
Wave to Lady Liberty
Helicopters hover right next to the bridge
The pace of the runners is astonishing
I move to the side
To let myself go slow
Welcome to Brooklyn
Immediately off the bridge
The cheering begins
The crowds are insane
Several people deep
Holding homemade signs
“You’re running better than our government!”
“You’re running faster than the MTA!”
“Kick some assphalt”
“Only 26 miles til beer”
“Tap here for a power up” with Mario Cart stars and mushrooms
“Punch here for a power up” with Trump’s face dead center
And my personal favorite
“If you want to restore your faith in humanity
Go watch a marathon”
Here are 53,000 runners
Young and old, and tall and short
People with hearing or vision impairments
Prosthetic limbs and wheelchairs
Survivors and servicefolk
Writers and waiters and workers and all manner of
Human beings
From all across the globe
Out running a Very Long Distance
Because they can
And hundreds and hundreds of thousands of their friends and loved ones
And perfect strangers
Are lining the streets
Cheering them on
And another 12,000 more have given up their Sunday to
Hand out water and gatorade and bananas
And the coming together of it all --
If you’re reading this you likely have a physical body
And sometimes
That body is creaky and tired and you may feel
Your very blood cells have betrayed you
And yet, here you are
Isn’t that an astonishing thing?!
We run down Fourth Ave
Through the flavors of Brooklyn
Russian, Polish, Chinese, Hispanic
You know you’ve hit Park Slope when the puppies appear
Mile 8, past BAM
(Remember when I worked there?
Too soon after treatment
I wasn’t ready
I was itching to work)
Turn right onto Lafayette
I hear a familiar voice
“LU!”
It’s Adam from London from Australia
I give him a hug
Familiar faces are a boost
Keep running
The Emmanuel Baptist Church
On Lafayette and St James
Is holding its service outside
The steps are packed with people
The preacher is singing
The gospel choir is singing
My heart is singing
It becomes quieter in the Hasidic neighborhoods
The men seem to ignore the runners
The little girls in their uniform dresses cheer from the sidewalk
Or from windows above the street
The parties are raucous in Williamsburg
I hear someone yelling “LU!”
It’s Adrienne from camp
I give her a hug
Keep running
Aaron said he’ll be at mile 13
I take out my phone to message him
My phone is dead
I stop to pee
I don’t see Aaron
Keep running
Over the Pulaski Bridge
Into Queens and
Before you know it you’re at the Queensboro Bridge
The red and white stacks of Big Allis
Forever in mind intertwined with Sloan
Transplant. Recovery. Anniversary. Five.
We round the corner onto 59th
Welcome to New York City!
Turn left onto First Ave
The crowds
The cheering
In my head
Five years, five years, five years
Mile 17
Past the hospital
I make heart signs at the nurses in scrubs
I say thank you in my head to Dr Stein and Dr P and Kim
And every single nurse and porter and attendant
And to every power there is
That I don’t have to be there anymore
Somewhere on the upper east side
I see Rickey from chorus
Give her a hug
Oh the precious souls we meet
Coming to mile 20
I know I’m going to see Aaron and
The Rabinowii Tribe
David joins me
A needed boost
I’m beginning to hurt
The front of my ankles
My hips
My heart, I know I’m not going to make it in less than 6 hours and
I’m disappointed
David talks me off the ledge
He tells me to go slow
Encourages me to get pain killers at the Medical Tent
Drink water and eat a gel
Remember
You just ran a marathon 6 weeks ago
You had rehearsal all week
This is your third marathon this year
It’s ok to walk
You’re doing the thing
Into the park
It smells of fallen leaves and a warm fire
The Rabinowii’s appear again at Mile 24
David steps away
The last two miles feel like forever
The crowds are incredible
No one is laughing at me for walking
No one is telling me I’m slow
Or pathetic
They’re cheering
“You can do this Luisa!”
“You’re so close”
“Go Fred’s Team!”
Briefly out of the park on 59th and 5th
The sight of Columbus Circle lifts me
I know the end is close
Back into the park
The music from the finish line
I can hear the announcer calling out names
The crowds are cheering at full volume
I run
Step over the line
Marathon number five is done.
The lead up to the anniversary of my transplant
Has been emotional
And hard
I have felt robbed
Taken away from myself
Frustrated that I have this anniversary at all
This year
I’m too busy to be thinking about
Stupid Cancer
On the morning of the 5th anniversary of
Having my sister’s T-depleted stem cells
Injected into my port
I’m rushing to the Jacob Javits Convention Center
To pick up my race bib
Number 65800
(How fast do I have to be before I can get 24601?!)
Collect my t-shirt
Over to the Fred’s Team table
Friendly faces
Up to rehearsal at Ripley Grier
Spend the morning singing
Dancing
Running lines
In the afternoon the director starts rehearsal with a question
Who has a New York story?
I have a New York story
Five years ago today
Halloween. Hospital.
Stem cell transplant
Life/death
Here we are
On Friday
It is an honor and a thrill
To walk in the NYC Marathon Opening Ceremony
As a part of Team MovedMe
26 inspiring runners representing 53,000+, including
Yvette, who had been told as a child she would never walk again after being hit by car who is now a retired 26-year army vet running her 18th marathon,
Natasha, completing the Abbott World Marathon Major Six-Star in memory of her sister
Issac, a trans person representing Front Runners New York, and
A leukemia survivor running her 5th marathon on the 5th anniversary of her stem cell transplant
Walking over the Finish Line
Keep the emotions under control
Save it for Sunday
Saturday night
Italian for dinner
Hot date with my love
Traipsing the streets of NYC
To get new iron-on letters for my shirt
Thank goodness for daylight savings
Race day
Up at 4am
A&D cream to prevent chafing
Under arms, under boobs, inner thighs
Soles of feet and between the toes
Sunscreen
Sports bra, shirt, leggings, socks, shoes
Belt with dates, gels, phone charger, earphones, ID, and a bank card just in case
Meet the Team MovedMe bus at 51st between 6th and 7th
Everyone is shivering in the cold
Wishing for coffee
We board the bus
Head down through midtown
Past Times Square where Fred’s Team is gathered
I wish I could be in two places at once
I sleep
We arrive at Fort Wadsworth, Staten Island
The police are lovely
A security guard yells in my face
Your bib needs to be on! Stop! Don’t move!
But almost no one has them on yet
We’re saving them from being crinkled
I try not to be rude to her
She’s been up since god knows when
She’s just doing her job
She’s going to have a long day
Samantha from New York Road Runners leads us to the
Broadcast and Media Tent
Heated, and stocked with bagels and pastries and fresh fruit
The sun rises behind the Verrazano Bridge
Revealing a pale blue sky
The mercury promises not to climb too much
Perfect conditions for a nice long run
Our bags are collected
We hear the canon
The professionals are off
They’ll be almost done before we’ve even started
We are led to the corral
Extra layers are stripped off
Tossed in the giant blue bins to be taken to charity stores around the city
Christy Altomere sings the national anthem
Normally I get teary
But I’m too nervous/excited/emotional about running to get emotional about the anthem
We are called to the start line
Inch forward
On your marks
The canon fires
Frank Sinatra croons
It’s up to you
New York, New York!
We’re off
I’ve only ever run on the lower level of the bridge
Wave 1 runs on top
I thought I’d be afraid of the height
I don’t even register it
The views are stunning
The dark blue of the Lower and Upper bays
Against the pale blue of the sky
Manhattan to the left
Brooklyn to the right
Wave to Lady Liberty
Helicopters hover right next to the bridge
The pace of the runners is astonishing
I move to the side
To let myself go slow
Welcome to Brooklyn
Immediately off the bridge
The cheering begins
The crowds are insane
Several people deep
Holding homemade signs
“You’re running better than our government!”
“You’re running faster than the MTA!”
“Kick some assphalt”
“Only 26 miles til beer”
“Tap here for a power up” with Mario Cart stars and mushrooms
“Punch here for a power up” with Trump’s face dead center
And my personal favorite
“If you want to restore your faith in humanity
Go watch a marathon”
Here are 53,000 runners
Young and old, and tall and short
People with hearing or vision impairments
Prosthetic limbs and wheelchairs
Survivors and servicefolk
Writers and waiters and workers and all manner of
Human beings
From all across the globe
Out running a Very Long Distance
Because they can
And hundreds and hundreds of thousands of their friends and loved ones
And perfect strangers
Are lining the streets
Cheering them on
And another 12,000 more have given up their Sunday to
Hand out water and gatorade and bananas
And the coming together of it all --
If you’re reading this you likely have a physical body
And sometimes
That body is creaky and tired and you may feel
Your very blood cells have betrayed you
And yet, here you are
Isn’t that an astonishing thing?!
We run down Fourth Ave
Through the flavors of Brooklyn
Russian, Polish, Chinese, Hispanic
You know you’ve hit Park Slope when the puppies appear
Mile 8, past BAM
(Remember when I worked there?
Too soon after treatment
I wasn’t ready
I was itching to work)
Turn right onto Lafayette
I hear a familiar voice
“LU!”
It’s Adam from London from Australia
I give him a hug
Familiar faces are a boost
Keep running
The Emmanuel Baptist Church
On Lafayette and St James
Is holding its service outside
The steps are packed with people
The preacher is singing
The gospel choir is singing
My heart is singing
It becomes quieter in the Hasidic neighborhoods
The men seem to ignore the runners
The little girls in their uniform dresses cheer from the sidewalk
Or from windows above the street
The parties are raucous in Williamsburg
I hear someone yelling “LU!”
It’s Adrienne from camp
I give her a hug
Keep running
Aaron said he’ll be at mile 13
I take out my phone to message him
My phone is dead
I stop to pee
I don’t see Aaron
Keep running
Over the Pulaski Bridge
Into Queens and
Before you know it you’re at the Queensboro Bridge
The red and white stacks of Big Allis
Forever in mind intertwined with Sloan
Transplant. Recovery. Anniversary. Five.
We round the corner onto 59th
Welcome to New York City!
Turn left onto First Ave
The crowds
The cheering
In my head
Five years, five years, five years
Mile 17
Past the hospital
I make heart signs at the nurses in scrubs
I say thank you in my head to Dr Stein and Dr P and Kim
And every single nurse and porter and attendant
And to every power there is
That I don’t have to be there anymore
Somewhere on the upper east side
I see Rickey from chorus
Give her a hug
Oh the precious souls we meet
Coming to mile 20
I know I’m going to see Aaron and
The Rabinowii Tribe
David joins me
A needed boost
I’m beginning to hurt
The front of my ankles
My hips
My heart, I know I’m not going to make it in less than 6 hours and
I’m disappointed
David talks me off the ledge
He tells me to go slow
Encourages me to get pain killers at the Medical Tent
Drink water and eat a gel
Remember
You just ran a marathon 6 weeks ago
You had rehearsal all week
This is your third marathon this year
It’s ok to walk
You’re doing the thing
Into the park
It smells of fallen leaves and a warm fire
The Rabinowii’s appear again at Mile 24
David steps away
The last two miles feel like forever
The crowds are incredible
No one is laughing at me for walking
No one is telling me I’m slow
Or pathetic
They’re cheering
“You can do this Luisa!”
“You’re so close”
“Go Fred’s Team!”
Briefly out of the park on 59th and 5th
The sight of Columbus Circle lifts me
I know the end is close
Back into the park
The music from the finish line
I can hear the announcer calling out names
The crowds are cheering at full volume
I run
Step over the line
Marathon number five is done.
To Fred’s Team, especially Julia and Matt,
to NYRR and Team MovedMe, especially Samantha and Matt,
to everyone who donated,
to everyone who sent messages and tracked the race,
to Adam, Adrienne, David, Katherine, Rickey, Maddy, Naomi, Paul, & Sara, for being there,
and Aaron my love,
thank you thank you thank you.
to NYRR and Team MovedMe, especially Samantha and Matt,
to everyone who donated,
to everyone who sent messages and tracked the race,
to Adam, Adrienne, David, Katherine, Rickey, Maddy, Naomi, Paul, & Sara, for being there,
and Aaron my love,
thank you thank you thank you.
- Published on
Fly up to Rochester
Feels incongruous the day after hundreds of thousands of people
March to save the world from climate change
Business as usual on the airlines
Plastic water bottles
Disposable single-use everything
Greeted by Bonnie at the airport
A new friend and immediate kindred spirit
We spend a delightful afternoon
With husband Kurt, and puppers ROz and Teddy
On a boat
Floating around Lake Honeoye
Dipping our feet in the chilly water
I envision abandoning everything to become a writer
Residing on the smallest of the Finger Lakes
In a little cabin
Making friends with the ducks and egrets
And learning to paddle board
Easy to have those visions
On the eve of a summery autumnal equinox
And not in the middle of a north-east frigid arctic winter
An enormous salad and grilled chicken for dinner
Downing gatorade. It’s going to be hot tomorrow.
Lay out the running gear
Place gels and dates in the pouch
Charge my phone
Charge the spare charger
Sleep and recharge myself
Wake up in the dark
A&D cream all over my feet
Under my sports bra
Under my arms
Don my uniform
Tie my laces
Bonnie and I head out as the sky is beginning to light
We drive to the finish line at Frontier Field
The parking lot is full of runners
School buses are lined up to take everyone down the road to the
Start line in Maplewood Park
We board with the other runners and a few supporters
A golden ball of a sun appears through the trees
Illuminating a sea of humanity
Over a thousand runners
Stretched out on the tennis courts
Bodies large and small, young and old
A celebration of humanity
The runners flex and chat
Nibble on apples and bananas and sachets of peanut butter
While their spouses and parents and loved ones stand by
Holding puppies and the remnants of breakfast
The announcer calls the runners to the start line
A benediction is given
While I’m in the port-a-loo
Thank you for the day, thank you for the runners, thank you for the volunteers
The national anthem is sung
It always makes me emotional
Last call to the start line
Bonnie waves,
I call out
“See you in six hours!”
A horn blares and we’re off
The Rochester Marathon 2019
Through the green and leafy park where
The air is cool and fresh
Out into an industrial looking area
(I later learn it is a Business Park)
One mile down,
Twenty-five point two to go.
Turn right onto Lake Avenue, a
Pretty tree-lined street
Running through the middle of two cemeteries
At the first water stop
I’m impressed that runners are throwing
Their cups into strategically placed bins
In New York, I’d be running on a sea of disintegrating paper
Make a right into Turning Point Park
Onto the Genesee Riverway Trail
Downhill under a canopy of trees
Someone has built cairns along the side of the path
Large and small stone towers precariously balanced
We come to the Genesee River
At the entrance to the boardwalk
A guitarist is playing
We run right over the water
And past mile four
Up the hill into suburbia
Turn right and come upon the entrance to a large bridge
The Colonel Patrick O'Rorke Memorial Bridge
It’s one of those bridges that can split in two
A marina below is filled with boats
The river is bounded by trees
A glorious sight
Over the bridge we enter
Irondeqouit
And begin a long loop back down to the start
I spend time wondering how to pronounce this place name
Iron-de-coit? Iron-de-quit? E-ron-de-quit?
The relay runners trade off
I envy the fresh runners
And try to run at my own pace
And not beat myself up for feeling slow
We come to a hill
Volunteers and onlookers at the top
You’ve got this! You made it!
All along St Paul’s Avenue
Families line the side of the road
They’ve set up their own water tables
Laden with snacks
Baked goods, fruit, and candy
“Take whatever you want! It’s all for you!”
One family has rented a jumping castle
Further down the road, a horn trio is set up on the grass
On one block, signs for Trump
On the next, signs for Biden and Warren
A kid tries to play saxophone while his friends
Run around him
A concrete bridge back over the river
A woman has the same hat as me
I tell her she has a nice hat
She laughs
Just before mile 10
We hear sirens
Motorbike police come down the road
“Move to the right. The leader is coming through!”
The man in first place comes sprinting past on his second lap
He is running so fast his feet seem to be touching his butt
His pace is incredible
We cheer for him
Back onto the Genesee River Trail
Through a parking lot filled with enthusiastic teens
Dressed in brightly colored outfits
Handing out water and gatorade
Back into Maplewood Park
The half-marathon runners can taste the finish
I breathe
End of the park
Back into the industrial zone
Half-way mark.
I’ve got this. I feel strong.
Marathon number four, you are mine.
Somewhere between mile 15 and 17
The sun begins to feel hot
I start to feel wiped
I begin to walk/run.
We turn right to make a loop through the Riverside Cemetery
To add an extra mile to the course
It’s quiet in the cemetery
I imagine the skeletons in their graves cheering for me
Wooohoooooo!
The occasional living volunteer with an orange flag points the way
I thank each one for staying on the course
I silently thank the volunteers unseen
Who placed yellow arrows on the ground
Genesee Riverway Trail
Trees. Cairns.
Downhill.
Run again.
The boardwalk. The river.
The guitarist is still there.
Thank you for being out here.
Thank you for playing.
I realize I’m not going to run this thing
In less than 6 hours
If I could run the rest of the way, I could do it
But the air is hot and
My legs and feet are burning
Tears sting
The goal is to finish, the goal is to finish
The goal is to finish
The Rochester Gilda’s Club volunteers
Are a welcome sight
At the end of the boardwalk
I want to run
I cannot run
I tell the volunteers what I’m doing
And that I’m a member in New York
They cheer extra loud
I try to run again
Suburbia.
The bridge.
Irondeqouit.
The hill.
The families have packed up
The saxophonist has gone inside
The horn players are still holding strong
One of them plays the call before a sergeant would yell
“Charge!”
I cannot charge. I wave.
Occasional police guard the road barricades
Volunteers.
Concrete bridge.
Maplewood Park.
The sweet teens from the
St John Fisher Rowing Team and
Harley Allendale Columbia Cross Country Club
Provide much needed water and cheering
The pink sports drink tastes like medicine
Head to the part where on the first lap
The half-marathon runners peeled away
I must be close?!
I am in agony
My feet hurt
My legs hurt
My sides hurt
My brain hurts
I’m slow
I’m last
Where is the finish?
Two miles to go.
Through Lower Falls Park
Run back over the river
A spectacular waterfall
I wish I had time to take a photo
I wish I had energy to take a photo
We leave the trail
Just before the 25 mile mark
A torturously steep hill
Toward the top, I see a guy bent over
Puking his guts up
I’ve never seen anything quite like it
He just keeps puking torrents of clear liquid
I wave to the volunteers at the top of the hill
They think I am waving because I need encouragement
I yell out, “He needs help!”
“What?”
“He needs help!”
The volunteers leap into action
An ambulance siren can be heard behind me
I hope the man is ok
Past another waterfall
My god, Rochester is gorgeous
I wish I could appreciate it
Right now, I have a marathon to finish
Turn onto a main road
The river becomes obscured by industrial warehouses
There is no shade
Only blazing sun
The world is unforgiving concrete and warehouses and trash
Cars crawl down the road on my left
Some guy rolls down his window
“Bit warm isn’t it?”
In my head, I tell him to fuck off
How many marathons have you run today, asshole?
I keep walking and trying to run
I know I’m so close
Turn right
Less than a kilometer to go
A volunteer: They’re going to close the course in 10 minutes
Me: No. I’m going to finish. Please tell them to let me finish.
I start running again.
The sky is bright blue.
My legs are burning.
My feet are burning.
Everything hurts.
Where is the goddamn finish line?!
I see it up ahead
I shuffle run
I desperately want to finish
Bonnie spots me. She cheers.
It gives me the last bit of oomph I need
I cross the finish line and burst into tears.
My calves cramp.
My feet cramp.
I am starving.
I down gatorade and a bagel.
And ice cream.
And water.
And more gatorade.
A massage therapist helps me through the cramping.
I have awful chafing between my legs. Didn’t think to put cream there. I know for next time.
That hurt.
That was hard.
I did it.
Marathon number four.
Feels incongruous the day after hundreds of thousands of people
March to save the world from climate change
Business as usual on the airlines
Plastic water bottles
Disposable single-use everything
Greeted by Bonnie at the airport
A new friend and immediate kindred spirit
We spend a delightful afternoon
With husband Kurt, and puppers ROz and Teddy
On a boat
Floating around Lake Honeoye
Dipping our feet in the chilly water
I envision abandoning everything to become a writer
Residing on the smallest of the Finger Lakes
In a little cabin
Making friends with the ducks and egrets
And learning to paddle board
Easy to have those visions
On the eve of a summery autumnal equinox
And not in the middle of a north-east frigid arctic winter
An enormous salad and grilled chicken for dinner
Downing gatorade. It’s going to be hot tomorrow.
Lay out the running gear
Place gels and dates in the pouch
Charge my phone
Charge the spare charger
Sleep and recharge myself
Wake up in the dark
A&D cream all over my feet
Under my sports bra
Under my arms
Don my uniform
Tie my laces
Bonnie and I head out as the sky is beginning to light
We drive to the finish line at Frontier Field
The parking lot is full of runners
School buses are lined up to take everyone down the road to the
Start line in Maplewood Park
We board with the other runners and a few supporters
A golden ball of a sun appears through the trees
Illuminating a sea of humanity
Over a thousand runners
Stretched out on the tennis courts
Bodies large and small, young and old
A celebration of humanity
The runners flex and chat
Nibble on apples and bananas and sachets of peanut butter
While their spouses and parents and loved ones stand by
Holding puppies and the remnants of breakfast
The announcer calls the runners to the start line
A benediction is given
While I’m in the port-a-loo
Thank you for the day, thank you for the runners, thank you for the volunteers
The national anthem is sung
It always makes me emotional
Last call to the start line
Bonnie waves,
I call out
“See you in six hours!”
A horn blares and we’re off
The Rochester Marathon 2019
Through the green and leafy park where
The air is cool and fresh
Out into an industrial looking area
(I later learn it is a Business Park)
One mile down,
Twenty-five point two to go.
Turn right onto Lake Avenue, a
Pretty tree-lined street
Running through the middle of two cemeteries
At the first water stop
I’m impressed that runners are throwing
Their cups into strategically placed bins
In New York, I’d be running on a sea of disintegrating paper
Make a right into Turning Point Park
Onto the Genesee Riverway Trail
Downhill under a canopy of trees
Someone has built cairns along the side of the path
Large and small stone towers precariously balanced
We come to the Genesee River
At the entrance to the boardwalk
A guitarist is playing
We run right over the water
And past mile four
Up the hill into suburbia
Turn right and come upon the entrance to a large bridge
The Colonel Patrick O'Rorke Memorial Bridge
It’s one of those bridges that can split in two
A marina below is filled with boats
The river is bounded by trees
A glorious sight
Over the bridge we enter
Irondeqouit
And begin a long loop back down to the start
I spend time wondering how to pronounce this place name
Iron-de-coit? Iron-de-quit? E-ron-de-quit?
The relay runners trade off
I envy the fresh runners
And try to run at my own pace
And not beat myself up for feeling slow
We come to a hill
Volunteers and onlookers at the top
You’ve got this! You made it!
All along St Paul’s Avenue
Families line the side of the road
They’ve set up their own water tables
Laden with snacks
Baked goods, fruit, and candy
“Take whatever you want! It’s all for you!”
One family has rented a jumping castle
Further down the road, a horn trio is set up on the grass
On one block, signs for Trump
On the next, signs for Biden and Warren
A kid tries to play saxophone while his friends
Run around him
A concrete bridge back over the river
A woman has the same hat as me
I tell her she has a nice hat
She laughs
Just before mile 10
We hear sirens
Motorbike police come down the road
“Move to the right. The leader is coming through!”
The man in first place comes sprinting past on his second lap
He is running so fast his feet seem to be touching his butt
His pace is incredible
We cheer for him
Back onto the Genesee River Trail
Through a parking lot filled with enthusiastic teens
Dressed in brightly colored outfits
Handing out water and gatorade
Back into Maplewood Park
The half-marathon runners can taste the finish
I breathe
End of the park
Back into the industrial zone
Half-way mark.
I’ve got this. I feel strong.
Marathon number four, you are mine.
Somewhere between mile 15 and 17
The sun begins to feel hot
I start to feel wiped
I begin to walk/run.
We turn right to make a loop through the Riverside Cemetery
To add an extra mile to the course
It’s quiet in the cemetery
I imagine the skeletons in their graves cheering for me
Wooohoooooo!
The occasional living volunteer with an orange flag points the way
I thank each one for staying on the course
I silently thank the volunteers unseen
Who placed yellow arrows on the ground
Genesee Riverway Trail
Trees. Cairns.
Downhill.
Run again.
The boardwalk. The river.
The guitarist is still there.
Thank you for being out here.
Thank you for playing.
I realize I’m not going to run this thing
In less than 6 hours
If I could run the rest of the way, I could do it
But the air is hot and
My legs and feet are burning
Tears sting
The goal is to finish, the goal is to finish
The goal is to finish
The Rochester Gilda’s Club volunteers
Are a welcome sight
At the end of the boardwalk
I want to run
I cannot run
I tell the volunteers what I’m doing
And that I’m a member in New York
They cheer extra loud
I try to run again
Suburbia.
The bridge.
Irondeqouit.
The hill.
The families have packed up
The saxophonist has gone inside
The horn players are still holding strong
One of them plays the call before a sergeant would yell
“Charge!”
I cannot charge. I wave.
Occasional police guard the road barricades
Volunteers.
Concrete bridge.
Maplewood Park.
The sweet teens from the
St John Fisher Rowing Team and
Harley Allendale Columbia Cross Country Club
Provide much needed water and cheering
The pink sports drink tastes like medicine
Head to the part where on the first lap
The half-marathon runners peeled away
I must be close?!
I am in agony
My feet hurt
My legs hurt
My sides hurt
My brain hurts
I’m slow
I’m last
Where is the finish?
Two miles to go.
Through Lower Falls Park
Run back over the river
A spectacular waterfall
I wish I had time to take a photo
I wish I had energy to take a photo
We leave the trail
Just before the 25 mile mark
A torturously steep hill
Toward the top, I see a guy bent over
Puking his guts up
I’ve never seen anything quite like it
He just keeps puking torrents of clear liquid
I wave to the volunteers at the top of the hill
They think I am waving because I need encouragement
I yell out, “He needs help!”
“What?”
“He needs help!”
The volunteers leap into action
An ambulance siren can be heard behind me
I hope the man is ok
Past another waterfall
My god, Rochester is gorgeous
I wish I could appreciate it
Right now, I have a marathon to finish
Turn onto a main road
The river becomes obscured by industrial warehouses
There is no shade
Only blazing sun
The world is unforgiving concrete and warehouses and trash
Cars crawl down the road on my left
Some guy rolls down his window
“Bit warm isn’t it?”
In my head, I tell him to fuck off
How many marathons have you run today, asshole?
I keep walking and trying to run
I know I’m so close
Turn right
Less than a kilometer to go
A volunteer: They’re going to close the course in 10 minutes
Me: No. I’m going to finish. Please tell them to let me finish.
I start running again.
The sky is bright blue.
My legs are burning.
My feet are burning.
Everything hurts.
Where is the goddamn finish line?!
I see it up ahead
I shuffle run
I desperately want to finish
Bonnie spots me. She cheers.
It gives me the last bit of oomph I need
I cross the finish line and burst into tears.
My calves cramp.
My feet cramp.
I am starving.
I down gatorade and a bagel.
And ice cream.
And water.
And more gatorade.
A massage therapist helps me through the cramping.
I have awful chafing between my legs. Didn’t think to put cream there. I know for next time.
That hurt.
That was hard.
I did it.
Marathon number four.
With thanks to Yellow Jacket Racing, the volunteers, the water stop groups, the musicians, and especially Bonnie Jaeckel for taking such good care of me.
The Rochester Marathon was my 4th marathon as part of my goal to run 5 marathons for 5 years of remission from acute myeloid leukemia. Number 5 will take place on November 4, a few days after the anniversary of my stem transplant, in New York City!
I am running with Fred's Team and raising vital funds for leukemia research at Memorial Sloan Kettering Cancer Center. It's my way of saying thank you to the team that saved my life.
If you feel inspired by my story, please consider making a donation!
The Rochester Marathon was my 4th marathon as part of my goal to run 5 marathons for 5 years of remission from acute myeloid leukemia. Number 5 will take place on November 4, a few days after the anniversary of my stem transplant, in New York City!
I am running with Fred's Team and raising vital funds for leukemia research at Memorial Sloan Kettering Cancer Center. It's my way of saying thank you to the team that saved my life.
If you feel inspired by my story, please consider making a donation!
- Published on
(body art by Jemma Fassett)
Today is my 5th cancerversary.
Five years ago I went to the E.R. with what I thought was the flu, and infected bug bites, one on each leg. My blood work quickly showed that my white cell counts were astronomically high. The doctor told me I would start to hear the word “cancer.” I told him he had the wrong patient. I was an organic eating vegetarian who exercised regularly, never smoked, rarely drank, and meditated. I didn’t have cancer.
I had cancer. Acute myeloid leukemia, a rare blood cancer that more is more likely to affect men in their sixties and has a survival rate beyond 5 years of around 25-30%. I was told that if I didn’t undergo immediate treatment, I’d be dead in a month.
We still don’t know what causes acute myeloid leukemia. Risk factors include: high doses of radiation or benzene. Nope. Smoking. Nope. Previous radiation or chemotherapy. Nope. (Well, now, yup. See below for Fear of Relapse). Family history. Nope.
Over a dozen bone marrow biopsies (how did I manage to forget the actual number?!), 11 doses of full body radiation, 3 rounds of chemo, and 1 stem cell transplant with cells donated by my sister, Anita, later, I was declared in remission.
The recovery was hell. I had nausea. Fatigue. Depression. Anxiety. Mood swings. Weight swings. Chemo brain. My fingernails fell off one by one. I went into early onset menopause. My thyroid stopped working. I had osteopenia. I was immune suppressed and not allowed to eat takeout, ride the subway, or go to the theatre. I lost all my hair, including my eyelashes. Actually, I loved being bald. Cancer perk: I discovered I rock a shaved head.
I got to attend my own funeral. I got to feel the outpouring of love and support when we told everyone I was sick.
I was told it would take 3-5 years to recover. They were not wrong. It was tough and felt like it would last forever. With the support of my amazing husband, Aaron, and our tribe of generous wonderful folk, we got through it. Pro-tip, if you have to go through a terrifying health crisis shortly after getting married, make sure you have married a Zen Boy Scout.
Five years later, I’m healthy and strong. I run marathons dammit!
The mental game is the hardest. I’m terrified of relapse. Every headache, every time I’m over-tired, every bruise, every cut that takes a little longer to heal must be Cancer. Every medical appointment is stressful and anxiety-inducing. Most medical professionals I’ve encountered outside of Memorial Sloan Kettering don’t understand how to treat a Young Adult Survivor of Leukemia. They don’t understand that a 30-something woman can be in menopause. I’m impatient. I want everything done/learnt/achieved yesterday.
I’m rushing to catch up on lost time. To make the most of time in case it’s limited. I’ve seen 141 shows since I was allowed back into a theatre. I’ve run three marathons and three half-marathons. I’ve written and performed a one-woman show about my experience, The Big C Cabaret.
The chances of relapse decrease significantly after 5 years. Have I really reached that magic number? After losing the genetic lottery that gave me blood cancer in the first place, have I won the Cancer Survival lottery? Knock on wood. Turn around three times. Throw salt in the air.
The places on my legs where the infected bug bites were have turned into beautiful mandala shaped scars. When I’m wearing shorts, people see them and ask, “what are those marks on your legs?” They are my story.
In September my legs and I are going to run our 4th marathon.
In November, on the 5th anniversary of my stem cell transplant, I’ll run my 5th marathon. I’m running with Fred’s Team and raising vital funds for leukemia research at Memorial Sloan Kettering. It’s my way of saying thank you to the amazing doctors and researchers that saved my life.
Five years ago, I was dying.
Today, I am here. I am here. I am here!
Five years ago I went to the E.R. with what I thought was the flu, and infected bug bites, one on each leg. My blood work quickly showed that my white cell counts were astronomically high. The doctor told me I would start to hear the word “cancer.” I told him he had the wrong patient. I was an organic eating vegetarian who exercised regularly, never smoked, rarely drank, and meditated. I didn’t have cancer.
I had cancer. Acute myeloid leukemia, a rare blood cancer that more is more likely to affect men in their sixties and has a survival rate beyond 5 years of around 25-30%. I was told that if I didn’t undergo immediate treatment, I’d be dead in a month.
We still don’t know what causes acute myeloid leukemia. Risk factors include: high doses of radiation or benzene. Nope. Smoking. Nope. Previous radiation or chemotherapy. Nope. (Well, now, yup. See below for Fear of Relapse). Family history. Nope.
Over a dozen bone marrow biopsies (how did I manage to forget the actual number?!), 11 doses of full body radiation, 3 rounds of chemo, and 1 stem cell transplant with cells donated by my sister, Anita, later, I was declared in remission.
The recovery was hell. I had nausea. Fatigue. Depression. Anxiety. Mood swings. Weight swings. Chemo brain. My fingernails fell off one by one. I went into early onset menopause. My thyroid stopped working. I had osteopenia. I was immune suppressed and not allowed to eat takeout, ride the subway, or go to the theatre. I lost all my hair, including my eyelashes. Actually, I loved being bald. Cancer perk: I discovered I rock a shaved head.
I got to attend my own funeral. I got to feel the outpouring of love and support when we told everyone I was sick.
I was told it would take 3-5 years to recover. They were not wrong. It was tough and felt like it would last forever. With the support of my amazing husband, Aaron, and our tribe of generous wonderful folk, we got through it. Pro-tip, if you have to go through a terrifying health crisis shortly after getting married, make sure you have married a Zen Boy Scout.
Five years later, I’m healthy and strong. I run marathons dammit!
The mental game is the hardest. I’m terrified of relapse. Every headache, every time I’m over-tired, every bruise, every cut that takes a little longer to heal must be Cancer. Every medical appointment is stressful and anxiety-inducing. Most medical professionals I’ve encountered outside of Memorial Sloan Kettering don’t understand how to treat a Young Adult Survivor of Leukemia. They don’t understand that a 30-something woman can be in menopause. I’m impatient. I want everything done/learnt/achieved yesterday.
I’m rushing to catch up on lost time. To make the most of time in case it’s limited. I’ve seen 141 shows since I was allowed back into a theatre. I’ve run three marathons and three half-marathons. I’ve written and performed a one-woman show about my experience, The Big C Cabaret.
The chances of relapse decrease significantly after 5 years. Have I really reached that magic number? After losing the genetic lottery that gave me blood cancer in the first place, have I won the Cancer Survival lottery? Knock on wood. Turn around three times. Throw salt in the air.
The places on my legs where the infected bug bites were have turned into beautiful mandala shaped scars. When I’m wearing shorts, people see them and ask, “what are those marks on your legs?” They are my story.
In September my legs and I are going to run our 4th marathon.
In November, on the 5th anniversary of my stem cell transplant, I’ll run my 5th marathon. I’m running with Fred’s Team and raising vital funds for leukemia research at Memorial Sloan Kettering. It’s my way of saying thank you to the amazing doctors and researchers that saved my life.
Five years ago, I was dying.
Today, I am here. I am here. I am here!
Please feel free to share!
- Published on
At 29, I was a health-conscious organic eating vegetarian who exercised regularly and meditated. I was newly married, newly graduated from drama school, and excited to live and work in the city of my dreams, New York City.
Six weeks before my 30th birthday, I was diagnosed with acute myeloid leukemia, a disease that normally affects men in their sixties and has a survival rate beyond 5 years of around 25%.
I underwent 3 rounds of chemo and 11 doses of full body radiation, endured over a dozen bone marrow biopsies, and had a stem cell transplant with cells donated by my sister, Anita.
While life-saving, the treatment was painful and debilitating. I lost weight and gained weight. I went into early menopause. My fingernails fell off one by one. I spent long periods unable to walk due to fatigue and sores on my feet. I couldn’t eat take out, ride the subway, or go to the theatre. Depression, fatigue, and anxiety were a constant.
Whilst at Memorial Sloan Kettering for my stem cell transplant, I watched the 2014 NYC Marathon from my room in the isolation ward. I wondered if I would ever feel well, or even be up to running again. I could barely shuffle a lap of the transplant ward!
It took almost two years before I could run again. Then, in 2017, on the 3rd anniversary of my transplant, I ran the NYC Marathon, my first marathon. I ran it again in 2018.
This year I’ve set myself a big goal. I’m running 3 marathons — Queens, Rochester, and NYC. The NYC Marathon will be my 5th marathon, and it takes place on the 5th anniversary of my transplant. I’m running 5 for 5 baby!
I’m thrilled to be running with Fred’s Team and raising vital funds for leukemia research at Memorial Sloan Kettering. Will you join me in making cancer history? You can make a donation here.
I’ll be sharing my training and runs on Instagram, Twitter, and Facebook. Make sure to follow along!
Please feel free to share this post, and use the hashtag #LuisaRuns5for5.
Thank you for your support!
Six weeks before my 30th birthday, I was diagnosed with acute myeloid leukemia, a disease that normally affects men in their sixties and has a survival rate beyond 5 years of around 25%.
I underwent 3 rounds of chemo and 11 doses of full body radiation, endured over a dozen bone marrow biopsies, and had a stem cell transplant with cells donated by my sister, Anita.
While life-saving, the treatment was painful and debilitating. I lost weight and gained weight. I went into early menopause. My fingernails fell off one by one. I spent long periods unable to walk due to fatigue and sores on my feet. I couldn’t eat take out, ride the subway, or go to the theatre. Depression, fatigue, and anxiety were a constant.
Whilst at Memorial Sloan Kettering for my stem cell transplant, I watched the 2014 NYC Marathon from my room in the isolation ward. I wondered if I would ever feel well, or even be up to running again. I could barely shuffle a lap of the transplant ward!
It took almost two years before I could run again. Then, in 2017, on the 3rd anniversary of my transplant, I ran the NYC Marathon, my first marathon. I ran it again in 2018.
This year I’ve set myself a big goal. I’m running 3 marathons — Queens, Rochester, and NYC. The NYC Marathon will be my 5th marathon, and it takes place on the 5th anniversary of my transplant. I’m running 5 for 5 baby!
I’m thrilled to be running with Fred’s Team and raising vital funds for leukemia research at Memorial Sloan Kettering. Will you join me in making cancer history? You can make a donation here.
I’ll be sharing my training and runs on Instagram, Twitter, and Facebook. Make sure to follow along!
Please feel free to share this post, and use the hashtag #LuisaRuns5for5.
Thank you for your support!