- Published on
The last week of July is
Rather significant in our household
Four years ago yesterday I was diagnosed with acute myeloid leukemia
For the past four years
I have resented people who believed cancer was a blessing
It changed my life for the better!
It completely altered my outlook on life!
I’m a better person!
Cancer did not feel like a blessing to me
For the past four years, I have often felt robbed and angry
Cancer stole my health, my singing voice, my self-confidence, my libido
It gave me early onset menopause and the pre-cursor to osteoporosis
It made my thyroid stop functioning and my fingernails fall off one by one
It made my pre-existing anxiety and depression a million times worse
It set me back in achieving my goals and dreams of becoming a professional actor
When I step away from the anger
I can see that cancer has given me extraordinary gifts
I was in the right place at the right time for a terrible thing to happen
We were surrounded by an incredible community of people
I had access to one of the best cancer centers in the world
I have met all kinds of lovely wonderful people who have supported me, inspired me, lifted me up, and given me hope
All the incredible people at Memorial Sloan Kettering, my friends at CancerCare, my Immerman’s Angel Jodi, everyone at Fred’s Team
I wrote a one woman show
I ran a marathon
Although the cocktail of chemo infused with morphine made the first few weeks of treatment hazy
I remember kindness and patience and love
Jesse massaging my feet and bringing me all kinds of beverages to see what didn’t taste like poison
Brenda and her calming presence
Jarvis and UNSW friends recording stories for me to listen to
Nina and the paper cranes
Deb and Adrienne and Emma
Dozens of hand colored mandalas from camp
Letters and cards and emails and messages and financial support from all over the world
Anita enduring uncomfortable procedures to give me her stem cells
And through it all
Aaron has stayed by my side
Sleeping in a makeshift cot beside my hospital bed
Flushing my pick line when I had chemo at home
Holding my hand and patting my head through multiple bone marrow biopsies
Constantly telling me how much he loved me and treating me like I was the most beautiful wonderful person in the world even though I was a nauseous, fingernail-less, infuriated monster
He was, and is, kindness, patience, and love
This week is also our re-meeting anniversary
In the Connecticut woods
Surrounded by fireflies and a crackling sky
We saw each other
Him: Oh you’re back…
Me: Oh you’re back! Where’s Emily?
Him: We got a divorce… Where’s Kris?
Me: We never made it down the aisle.
I insisted I was not interested in a long distance or long term relationship.
This was strictly a summer fling.
I was moving to London and independent and free…
And seven years later we’re still together.
Been married for almost five.
Survived cancer for four.
My patient, kind, loving, and wonderful husband
To celebrate our anniversary, we saw the extraordinary Won’t You Be My Neighbor?
Kindness and love and regard for human dignity in a world where there is little kindness and love and regard for human dignity
The concept of Tikkun Olam
To repair, to improve the world, to bring out the goodness
We walked by the river and ate Mexican overlooking Manhattan and
We walked home
Hand in hand.
Rather significant in our household
Four years ago yesterday I was diagnosed with acute myeloid leukemia
For the past four years
I have resented people who believed cancer was a blessing
It changed my life for the better!
It completely altered my outlook on life!
I’m a better person!
Cancer did not feel like a blessing to me
For the past four years, I have often felt robbed and angry
Cancer stole my health, my singing voice, my self-confidence, my libido
It gave me early onset menopause and the pre-cursor to osteoporosis
It made my thyroid stop functioning and my fingernails fall off one by one
It made my pre-existing anxiety and depression a million times worse
It set me back in achieving my goals and dreams of becoming a professional actor
When I step away from the anger
I can see that cancer has given me extraordinary gifts
I was in the right place at the right time for a terrible thing to happen
We were surrounded by an incredible community of people
I had access to one of the best cancer centers in the world
I have met all kinds of lovely wonderful people who have supported me, inspired me, lifted me up, and given me hope
All the incredible people at Memorial Sloan Kettering, my friends at CancerCare, my Immerman’s Angel Jodi, everyone at Fred’s Team
I wrote a one woman show
I ran a marathon
Although the cocktail of chemo infused with morphine made the first few weeks of treatment hazy
I remember kindness and patience and love
Jesse massaging my feet and bringing me all kinds of beverages to see what didn’t taste like poison
Brenda and her calming presence
Jarvis and UNSW friends recording stories for me to listen to
Nina and the paper cranes
Deb and Adrienne and Emma
Dozens of hand colored mandalas from camp
Letters and cards and emails and messages and financial support from all over the world
Anita enduring uncomfortable procedures to give me her stem cells
And through it all
Aaron has stayed by my side
Sleeping in a makeshift cot beside my hospital bed
Flushing my pick line when I had chemo at home
Holding my hand and patting my head through multiple bone marrow biopsies
Constantly telling me how much he loved me and treating me like I was the most beautiful wonderful person in the world even though I was a nauseous, fingernail-less, infuriated monster
He was, and is, kindness, patience, and love
This week is also our re-meeting anniversary
In the Connecticut woods
Surrounded by fireflies and a crackling sky
We saw each other
Him: Oh you’re back…
Me: Oh you’re back! Where’s Emily?
Him: We got a divorce… Where’s Kris?
Me: We never made it down the aisle.
I insisted I was not interested in a long distance or long term relationship.
This was strictly a summer fling.
I was moving to London and independent and free…
And seven years later we’re still together.
Been married for almost five.
Survived cancer for four.
My patient, kind, loving, and wonderful husband
To celebrate our anniversary, we saw the extraordinary Won’t You Be My Neighbor?
Kindness and love and regard for human dignity in a world where there is little kindness and love and regard for human dignity
The concept of Tikkun Olam
To repair, to improve the world, to bring out the goodness
We walked by the river and ate Mexican overlooking Manhattan and
We walked home
Hand in hand.
- Published on
I first encountered Eve Ensler,
Well her work,
In my first week at university
A student production of
The Vagina Monologues.
It made me anxious.
Then whilst in London
I discovered V-Day and
Was inspired by the red-lipped dancing women
Joyous and proud
I read In The Body of the World
While walking the Camino
It was B.C., Before Cancer, but
I was still moved by Eve Ensler’s powerful, visceral writing
A year later
I was diagnosed with cancer
Now, A.C.
I found myself sitting in a theatre
With Eve Ensler herself
Speaking her words aloud
Telling her heart-breaking, gut wrenching, soul shaking story
In an extraordinary one woman show
Parts of it made me gasp
Parts of it made me nod in feverish agreement
Some parts I didn’t relate to at all
(I never wanted to be a mother
I have always loved trees
I loved being bald)
But Eve is captivating
She is who I want to be
Powerful, passionate
Emotive, articulate
A true artist connecting the dots
Between the personal and the professional
The self and the world.
The ending,
A total surprise
So beautiful and breathtaking
Eve invited us in
To walk in the garden of Ensler, and
I never wanted to leave.
Well her work,
In my first week at university
A student production of
The Vagina Monologues.
It made me anxious.
Then whilst in London
I discovered V-Day and
Was inspired by the red-lipped dancing women
Joyous and proud
I read In The Body of the World
While walking the Camino
It was B.C., Before Cancer, but
I was still moved by Eve Ensler’s powerful, visceral writing
A year later
I was diagnosed with cancer
Now, A.C.
I found myself sitting in a theatre
With Eve Ensler herself
Speaking her words aloud
Telling her heart-breaking, gut wrenching, soul shaking story
In an extraordinary one woman show
Parts of it made me gasp
Parts of it made me nod in feverish agreement
Some parts I didn’t relate to at all
(I never wanted to be a mother
I have always loved trees
I loved being bald)
But Eve is captivating
She is who I want to be
Powerful, passionate
Emotive, articulate
A true artist connecting the dots
Between the personal and the professional
The self and the world.
The ending,
A total surprise
So beautiful and breathtaking
Eve invited us in
To walk in the garden of Ensler, and
I never wanted to leave.
- Published on
Mile 17. Photo by Fred's Team
On Saturday, I go to bed early.
I wake up at midnight.
And again at 1am. Then 2am.
It’s the end of daylight savings — I’ll see 2am twice!
The clock doesn’t go backwards.
Google the time to make sure
Go back to sleep.
2.30... 3...
4.15am give up
Get dressed
Slather the soles of my feet
And in between my toes
With A&D cream.
Put on extra deodorant.
Pin bib to leg.
4:40am
Head down to the subway
Filled with people.
5:00am
Times Square is even busier than the subway
Tourists snap selfies
Like it is the middle of the day
Drunk revelers wander home
Like it is the end of the day
Oh New York
Beneath George M. Cohan, a sea of orange forms
The members of Fred’s Team convening
Right before our group photo
A lovely surprise
Our own billboard above Times Square
I wake up at midnight.
And again at 1am. Then 2am.
It’s the end of daylight savings — I’ll see 2am twice!
The clock doesn’t go backwards.
Google the time to make sure
Go back to sleep.
2.30... 3...
4.15am give up
Get dressed
Slather the soles of my feet
And in between my toes
With A&D cream.
Put on extra deodorant.
Pin bib to leg.
4:40am
Head down to the subway
Filled with people.
5:00am
Times Square is even busier than the subway
Tourists snap selfies
Like it is the middle of the day
Drunk revelers wander home
Like it is the end of the day
Oh New York
Beneath George M. Cohan, a sea of orange forms
The members of Fred’s Team convening
Right before our group photo
A lovely surprise
Our own billboard above Times Square
Fred's Team 2017
Then, onto the bus!
I don’t know how many buses are driving into Staten Island
But it must be hundreds
The logistics are mind-boggling
The number of runners
And volunteers
And paper cups
And liters of water and gatorade
And gels and bananas
And green ponchos
And blue ponchos
And trucks to pick up clothing
And medics
And port-a-loos
And pots of vaseline
And the list just keeps going
It is unnerving to pass an army tank
A soldier stands with rifle at the ready
We pass through security
At the Start Village
We wait in the Fred’s Team tent
I meet a girl who is running because her mom passed away ten years ago from cancer
Another worked in admin at Sloan and is now re-training as a nurse
We sit on a tarp and chat
Nibbling bagels and drinking water
Four friends dressed as Dorothy, Lion, Tinman, and Scarecrow, delight
An announcer calls for the Wave 1 runners
Everybody cheers
A little while later, the start gun booms
A wave of nerves sweeps through the tent
Wave 2.
Wave 3.
11am, several hours after we arrived
Wave 4 is finally called
In the excitement, I don’t get to wish my new friends luck
Thousands of people stream over to the start line corrals
Divided not only by wave, but by number and color
Wave 4, Corral A, Green
As I walk into my corral
Someone says we’ll be on the bottom half of the bridge
Phew, won’t need to conquer my fear of heights today!
A woman sings the American national anthem
She belts it out, sings even higher when we aren’t expecting it
Before jumping in to run the marathon herself
The runners cheer
I don’t know how many buses are driving into Staten Island
But it must be hundreds
The logistics are mind-boggling
The number of runners
And volunteers
And paper cups
And liters of water and gatorade
And gels and bananas
And green ponchos
And blue ponchos
And trucks to pick up clothing
And medics
And port-a-loos
And pots of vaseline
And the list just keeps going
It is unnerving to pass an army tank
A soldier stands with rifle at the ready
We pass through security
At the Start Village
We wait in the Fred’s Team tent
I meet a girl who is running because her mom passed away ten years ago from cancer
Another worked in admin at Sloan and is now re-training as a nurse
We sit on a tarp and chat
Nibbling bagels and drinking water
Four friends dressed as Dorothy, Lion, Tinman, and Scarecrow, delight
An announcer calls for the Wave 1 runners
Everybody cheers
A little while later, the start gun booms
A wave of nerves sweeps through the tent
Wave 2.
Wave 3.
11am, several hours after we arrived
Wave 4 is finally called
In the excitement, I don’t get to wish my new friends luck
Thousands of people stream over to the start line corrals
Divided not only by wave, but by number and color
Wave 4, Corral A, Green
As I walk into my corral
Someone says we’ll be on the bottom half of the bridge
Phew, won’t need to conquer my fear of heights today!
A woman sings the American national anthem
She belts it out, sings even higher when we aren’t expecting it
Before jumping in to run the marathon herself
The runners cheer
The start.
A male voice: “On your marks…”
I don’t hear the gun
But everyone starts running
So I run too
Straight onto the lower level of the Verazzano
The low hanging clouds mean
There isn’t much of a view
Just thousands of men and women
Shuffling on down the road
The first mile goes by in a blink
As soon as we are off the bridge
Men peel off to the sides of the road to pee
Women call out, “Not fair!”
One brave woman yells “Penis envy!”
And the other women laugh
In Fort Hamilton
Small groups of people
Stand on the overpasses above the road
Cheering despite the cold and wet
We run past Dyker Heights, Bay Ridge, and into Sunset Park
The different flavors of the neighborhoods
Polish, Chinese, Latin
Evangelical churches with giant billboards
And tiendas buenas
I get a kick out of running past Green Wood Cemetery
This is my neighborhood
(The area, not the cemetery)
I live in Brooklyn!
I’m running the NYC Marathon!
In Park Slope the crowd is wild
Thousands of people line the streets
I am so glad Paula sewed my name to my shirt
Perfect strangers yell out
“Go LuLu!” “You got this LuLu!”
While others chant, “LuLu! LuLu!”
Aaron texts and tells me to slow down
Not to go too fast too soon
It is hard not to get swept up in the excitement
At mile 7
Paula happens to be the first person I see that I know
I pull over and give her a hug
Within the same block
I see Gabriel and Deborah
Miles and Matt and
Alana
It is so encouraging to see my people in the crowd
Faces beaming
The course takes us past the Barclays Center
Giant screens and an announcer calling out names
We run past the Brooklyn Academy of Music
I worked there briefly, before I was really ready to work again
It was hard
Now I’m running the marathon.
The Hasidic section of Williamsburg is quiet
Except for gaggles of bemused looking schoolgirls
Who are trying to figure out how to safely cross the running river
The party resumes in upper Williamsburg with
DJs leading enthusiastic crowds
In ecstatic beat-driven dances
The air reeks of beer
The ground is littered with paper cups
I didn’t expect to hurt from smiling
I don’t hear the gun
But everyone starts running
So I run too
Straight onto the lower level of the Verazzano
The low hanging clouds mean
There isn’t much of a view
Just thousands of men and women
Shuffling on down the road
The first mile goes by in a blink
As soon as we are off the bridge
Men peel off to the sides of the road to pee
Women call out, “Not fair!”
One brave woman yells “Penis envy!”
And the other women laugh
In Fort Hamilton
Small groups of people
Stand on the overpasses above the road
Cheering despite the cold and wet
We run past Dyker Heights, Bay Ridge, and into Sunset Park
The different flavors of the neighborhoods
Polish, Chinese, Latin
Evangelical churches with giant billboards
And tiendas buenas
I get a kick out of running past Green Wood Cemetery
This is my neighborhood
(The area, not the cemetery)
I live in Brooklyn!
I’m running the NYC Marathon!
In Park Slope the crowd is wild
Thousands of people line the streets
I am so glad Paula sewed my name to my shirt
Perfect strangers yell out
“Go LuLu!” “You got this LuLu!”
While others chant, “LuLu! LuLu!”
Aaron texts and tells me to slow down
Not to go too fast too soon
It is hard not to get swept up in the excitement
At mile 7
Paula happens to be the first person I see that I know
I pull over and give her a hug
Within the same block
I see Gabriel and Deborah
Miles and Matt and
Alana
It is so encouraging to see my people in the crowd
Faces beaming
The course takes us past the Barclays Center
Giant screens and an announcer calling out names
We run past the Brooklyn Academy of Music
I worked there briefly, before I was really ready to work again
It was hard
Now I’m running the marathon.
The Hasidic section of Williamsburg is quiet
Except for gaggles of bemused looking schoolgirls
Who are trying to figure out how to safely cross the running river
The party resumes in upper Williamsburg with
DJs leading enthusiastic crowds
In ecstatic beat-driven dances
The air reeks of beer
The ground is littered with paper cups
I didn’t expect to hurt from smiling
Sign by Katherine
Over the Pulaski Bridge into Queens
Rounding the corner I see
My name in rainbow letters on a card
Being held high in the air by Katherine,
Next to her, grinning like Cheshire Cats,
Aaron, Jesse, Brenda, Paul, Naomi, and David
I run to them, smooch Aaron, and keep running
I see Annie, Marc, and Laura
Well, I hear them before I see them --
An excited “Lu Lyons!” yelled across the street
Walk/running across Queensboro Bridge
I start getting emotional
The red and white stacks of Big Allis
Familiar sights from my first hospital room at Sloan
Everyone had said coming into Manhattan
We would be met with a wall of sound
It isn’t as loud as Park Slope
But the crowd is enthusiastic
Up First Avenue
I keep wanting to cry
We have driven up and down this road
Countless times for hospital appointments
When my immune system was too weak for mass transit
And my life was pick lines and ports and needles and counts
Don’t waste energy, stay focused
Mile 17
Memorial Sloan Kettering
The glorious Fred’s Team supporters
Orange and white pompoms waving in the wet
Up through East Harlem
Thinning crowds
The water stations are treacherous
Thousands of discarded cups
Disintegrate into a pulpy mess in the rain
Across the Willis Avenue Bridge
Into da Bronx and mile 20
Body flagging, legs cramping
Feet hurting
Lower back aching and
Brain no longer computing
Is a marathon 23 miles or 26?
How many kilometers are in a mile?
I have no idea how far I have to go
It is raining and
Everything Hurts
Aaron and the Rabinowii clan appear
I tell them I’m dying
I want to stop and fall into their arms
But they all look so excited
I have to keep going
Rounding the corner I see
My name in rainbow letters on a card
Being held high in the air by Katherine,
Next to her, grinning like Cheshire Cats,
Aaron, Jesse, Brenda, Paul, Naomi, and David
I run to them, smooch Aaron, and keep running
I see Annie, Marc, and Laura
Well, I hear them before I see them --
An excited “Lu Lyons!” yelled across the street
Walk/running across Queensboro Bridge
I start getting emotional
The red and white stacks of Big Allis
Familiar sights from my first hospital room at Sloan
Everyone had said coming into Manhattan
We would be met with a wall of sound
It isn’t as loud as Park Slope
But the crowd is enthusiastic
Up First Avenue
I keep wanting to cry
We have driven up and down this road
Countless times for hospital appointments
When my immune system was too weak for mass transit
And my life was pick lines and ports and needles and counts
Don’t waste energy, stay focused
Mile 17
Memorial Sloan Kettering
The glorious Fred’s Team supporters
Orange and white pompoms waving in the wet
Up through East Harlem
Thinning crowds
The water stations are treacherous
Thousands of discarded cups
Disintegrate into a pulpy mess in the rain
Across the Willis Avenue Bridge
Into da Bronx and mile 20
Body flagging, legs cramping
Feet hurting
Lower back aching and
Brain no longer computing
Is a marathon 23 miles or 26?
How many kilometers are in a mile?
I have no idea how far I have to go
It is raining and
Everything Hurts
Aaron and the Rabinowii clan appear
I tell them I’m dying
I want to stop and fall into their arms
But they all look so excited
I have to keep going
Bob's sign
Further down the road
I see my name on another giant card
Beneath it is Bob from the Lyric
His smile and cheers give a much needed boost
Even though I’ve been walk/running
By chance, I am always running, when I spot my friends in the crowd
Across the Madison Ave Bridge and
Down Fifth Avenue
I have been running forever and
I’m never going to finish
Whose insane idea was this???
Into Central Park
My legs and feet ache
I am walk/hobbling
A policewoman calls out with a loudspeaker
“Come on LuLu, you’re so close! Keep going, you got this!
I start running again
“Atta girl. Keep going!”
Mile 25
Oh my god. When does this thing end?
It is dark, it is raining
Where is the finish line?
Turn right onto West 59th
The crowd is ecstatic
I am shuffling/running/crying
I realize they’re going to take us through Columbus Circle
Faaark. It’s so far away.
Across the longest block in the world
Make a right
Back into the park
I can hear the finish line
I want to see it
I want to scream and cry
I want the pain in my legs to go away
Keep moving keep running
You got this, you got this
You’re nearly there
The finish line is brightly lit
The crowd is cheering
The announcer says
“Lulu from Fred’s Team sees that finish line!”
Yes she does!!!
I try to remember to keep my head up as I cross the line
You want a good photo
You want a good rest
You want to never run anywhere ever again
I walk/cry toward my medal
I walk/cry down the road
Someone hands me a recovery bag
I spot the Fred’s Team volunteers
One of them comes over, takes my bag, guides me to the tent
I am a blubbering mess
I am so proud of myself
I can’t believe I just ran a marathon
Everything hurts
I just ran a marathon
I am so happy
Everything hurts.
The Fred’s Team folk are warm and wonderful
People who I only met in person 24 hours ago
But have tracked my journey
Since I signed up in May, and
Have become my lifelines
The sit me down and ply me with gatorade and chips
I have to walk to meet my family
Up and over the pedestrian bridge
(Who puts stairs at the end of a marathon?!
Cruelty!!!)
Out to 72nd Street to meet the Rabinowii clan
Katherine places a laurel wreath on my head
Danni appears, he had seen me at the end but
I was in the zone
And missed him
I see my name on another giant card
Beneath it is Bob from the Lyric
His smile and cheers give a much needed boost
Even though I’ve been walk/running
By chance, I am always running, when I spot my friends in the crowd
Across the Madison Ave Bridge and
Down Fifth Avenue
I have been running forever and
I’m never going to finish
Whose insane idea was this???
Into Central Park
My legs and feet ache
I am walk/hobbling
A policewoman calls out with a loudspeaker
“Come on LuLu, you’re so close! Keep going, you got this!
I start running again
“Atta girl. Keep going!”
Mile 25
Oh my god. When does this thing end?
It is dark, it is raining
Where is the finish line?
Turn right onto West 59th
The crowd is ecstatic
I am shuffling/running/crying
I realize they’re going to take us through Columbus Circle
Faaark. It’s so far away.
Across the longest block in the world
Make a right
Back into the park
I can hear the finish line
I want to see it
I want to scream and cry
I want the pain in my legs to go away
Keep moving keep running
You got this, you got this
You’re nearly there
The finish line is brightly lit
The crowd is cheering
The announcer says
“Lulu from Fred’s Team sees that finish line!”
Yes she does!!!
I try to remember to keep my head up as I cross the line
You want a good photo
You want a good rest
You want to never run anywhere ever again
I walk/cry toward my medal
I walk/cry down the road
Someone hands me a recovery bag
I spot the Fred’s Team volunteers
One of them comes over, takes my bag, guides me to the tent
I am a blubbering mess
I am so proud of myself
I can’t believe I just ran a marathon
Everything hurts
I just ran a marathon
I am so happy
Everything hurts.
The Fred’s Team folk are warm and wonderful
People who I only met in person 24 hours ago
But have tracked my journey
Since I signed up in May, and
Have become my lifelines
The sit me down and ply me with gatorade and chips
I have to walk to meet my family
Up and over the pedestrian bridge
(Who puts stairs at the end of a marathon?!
Cruelty!!!)
Out to 72nd Street to meet the Rabinowii clan
Katherine places a laurel wreath on my head
Danni appears, he had seen me at the end but
I was in the zone
And missed him
The fabulous Danni
Downtown to David and Katherine’s
Naomi massages my feet
We marvel that I don’t have a single blister
I shower and discover awful chafing beneath my sports bra
The water stings but it’s also
A huge relief
I eat a mountain of salad
Fresh crusty bread
And two helpings of homemade lasagne
Paul and Naomi drive us home
Where I collapse into bed
The next morning I am still on a runners high
To my own amazement
I head back out to Sloan Kettering
I have been invited with Fred’s Team to visit the pediatric ward
It is strange to smell the antibacterial foam
See patients with their rolling dancing partners
Just a few floors down from where I was a few years ago
We meet a sixteen-year-old boy
Who is undergoing treatment for leukemia
I tell him I was going through the same thing three years ago
His eyes widen
You’ve got this, I tell him
You’ve got this
The end.
Naomi massages my feet
We marvel that I don’t have a single blister
I shower and discover awful chafing beneath my sports bra
The water stings but it’s also
A huge relief
I eat a mountain of salad
Fresh crusty bread
And two helpings of homemade lasagne
Paul and Naomi drive us home
Where I collapse into bed
The next morning I am still on a runners high
To my own amazement
I head back out to Sloan Kettering
I have been invited with Fred’s Team to visit the pediatric ward
It is strange to smell the antibacterial foam
See patients with their rolling dancing partners
Just a few floors down from where I was a few years ago
We meet a sixteen-year-old boy
Who is undergoing treatment for leukemia
I tell him I was going through the same thing three years ago
His eyes widen
You’ve got this, I tell him
You’ve got this
The end.
Thanks to the random lady on the subway who pointed out the conveniently placed 42 (as in 42km) behind me!
- Published on
Last week I had the pleasure of performing in a budding New York institution, the Cranky Cabaret. The night featured a wonderful collection of angry, snippy, and just plain bitchy "Songs of Vexation and Discord."
I performed "N.Y.C" from Annie, re-written to be about cancer, and "Part of Your World" from The Little Mermaid, re-written to be about an usher who wants to be an actor.
I hope you enjoy the clips!
I performed "N.Y.C" from Annie, re-written to be about cancer, and "Part of Your World" from The Little Mermaid, re-written to be about an usher who wants to be an actor.
I hope you enjoy the clips!
Big thanks to everyone who came out to support me, pianist Dave Koenig, and producers Jessica Morris and Kris Holz!
- Published on
Before I was diagnosed with acute myeloid leukemia, I was a running, non-smoking, rarely drinking, meditating, vegetarian. How and why the hell did I get blood cancer?
The following is a list of reasons told, or sent, to me by a wide range of people (none of them doctors) during my illness:
I got cancer because of:
The following is a list of reasons told, or sent, to me by a wide range of people (none of them doctors) during my illness:
I got cancer because of:
- Genetics
- My DNA
- The need to heal the pain of my ancestors
- The need to release old energy
- The need to shift my energy in moving to the United States
- Karma
- God's plan
- The fact that I “deserved it”
- Holding a deep hurt
- Holding deep-seated resentment
- Carrying hatred
- Being born premature
- Suppressed issues from my childhood
- Dealing with issues from my childhood
- There being too much yeast in my system
- Being a vegetarian
- Being too skinny
- Drinking milk/eating cheese/eating food
- Not drinking milk/eating cheese/eating food
- Eating food from the place that had the sign about carcinogens six years before
- Too much exercise
- Not enough exercise
- Chemtrails
- City air
- My school being under a power line
- Living next to a highway
- Running along a highway as a teenager
- Potential cancer clusters in my high school
- Potential cancer clusters at my university
- Too much plane travel
- Too much stress
- Bad luck
According to Sloan Kettering,
"Most people who develop leukemia have no known risk factors."
Photo, and cushion, by Paula Fleischer
"Risk factors" for AML include exposure to high doses of radiation or benzene, smoking, previous radiation or chemotherapy (yup, the cure that saved my life could also one day kill me. Fun!), and a family history (parent, child, or sibling. Most people who are diagnosed with AML do not have a direct relative with the disease).
I haven't been exposed to high doses of radiation or benzene, I was never a smoker, and I don't have a direct family member who has had AML.
I haven't been exposed to high doses of radiation or benzene, I was never a smoker, and I don't have a direct family member who has had AML.
Here’s the real reason I got cancer:
We don’t know... yet.
This is why we need to fund further research into understanding, and treating, leukemia.
I’m not magical or special. I was really lucky. I was in the right place at the right time for a shitty thing to happen to my body. I had access to one of the best cancer hospitals on the planet.
I'm incredibly fortunate to be in remission, and strong enough to be able to run a marathon. But fear of relapse is very real. According to the Leukemia and Lymphoma Society, only 26.8% of AML patients survive five years beyond diagnosis.
Medicine, science, and the hard work of many dedicated doctors saved my life when I got cancer. We still don’t know why I got it in the first place. Or if I will be one of the people who survives beyond five years.
There’s still time to donate to Fred’s Team before I run the NYC Marathon on November 5. The funds we raise will go towards furthering leukemia research at Sloan Kettering.
If you’ve been inspired by my runs, if you want to help kick stupid cancer’s butt, if you want to know why a healthy 29-year-old woman was diagnosed with a disease that usually affects men in their sixties, please make a donation today. Even small contributions can make a big difference!
Will you help me make cancer history?
- Published on
This post was supposed to go live on Friday, but a glitch meant it didn't publish. And then I got a message from my BMT doctor that my white blood cell count was a little high and I needed to have my blood work done again.
Cue epic relapse anxiety, imagining my imminent demise and wondering how long it would take to sort through all my (now) redundant stuff.
I did a bunch of cooking. I cleaned. I taught a lesson. I had the blood test. I went to work.
I was able to check the lab results online tonight, and the white blood cells are back in normal range. Phew! Imminent demise by stupid cancer is held off for another day.
Here's the original post from Friday. Thanks for the reminder, body...
I have a confession to make. For all the posts I make about being a cancer survivor, in the past few months it has been easy to “forget” that I was ever very close to death thanks to blood cancer. Almost three years post-transplant, after a long and difficult slog, I finally feel like my old healthy self.
Today I had a check-up appointment with the Sloan Kettering Survivorship Team. Chemo and radiation, along with early menopause, have put me at risk of osteoporosis so bone health will continue to be a part of my annual physical. I had blood tests and vitals checked (everything is looking good), and a bone density scan.
Unlike bone marrow biopsies, bone density scans are painless, quick and easy procedures. Despite being physically pain free, the testing brings up a lot of feelings. Oh, right. I was really sick and now it will affect me for the rest of my life.
Even “quick and easy” hospital visits take several hours. They’re draining, and bring up a lot of uncomfortable and downright distressing memories.
Unlike three years ago, Aaron doesn’t need to practically carry me home afterwards. This morning I ran a half marathon! And tonight I’m going to work! I’m doing SO. MUCH. BETTER.
I continue to be incredibly grateful to my team at Sloan Kettering. They saved my life, and continue to ensure I stay healthy. It feels so good to be giving back by running the NYC Marathon with Fred’s Team and raising money for leukemia research at Sloan Kettering.
Maybe one day the treatments for leukemia will not be so invasive and debilitating. Maybe one day the treatment will not put women into early menopause. Or put people at risk of secondary cancer. Perhaps we’ll be able to figure out what causes AML and prevent it all together.
Cue epic relapse anxiety, imagining my imminent demise and wondering how long it would take to sort through all my (now) redundant stuff.
I did a bunch of cooking. I cleaned. I taught a lesson. I had the blood test. I went to work.
I was able to check the lab results online tonight, and the white blood cells are back in normal range. Phew! Imminent demise by stupid cancer is held off for another day.
Here's the original post from Friday. Thanks for the reminder, body...
I have a confession to make. For all the posts I make about being a cancer survivor, in the past few months it has been easy to “forget” that I was ever very close to death thanks to blood cancer. Almost three years post-transplant, after a long and difficult slog, I finally feel like my old healthy self.
Today I had a check-up appointment with the Sloan Kettering Survivorship Team. Chemo and radiation, along with early menopause, have put me at risk of osteoporosis so bone health will continue to be a part of my annual physical. I had blood tests and vitals checked (everything is looking good), and a bone density scan.
Unlike bone marrow biopsies, bone density scans are painless, quick and easy procedures. Despite being physically pain free, the testing brings up a lot of feelings. Oh, right. I was really sick and now it will affect me for the rest of my life.
Even “quick and easy” hospital visits take several hours. They’re draining, and bring up a lot of uncomfortable and downright distressing memories.
Unlike three years ago, Aaron doesn’t need to practically carry me home afterwards. This morning I ran a half marathon! And tonight I’m going to work! I’m doing SO. MUCH. BETTER.
I continue to be incredibly grateful to my team at Sloan Kettering. They saved my life, and continue to ensure I stay healthy. It feels so good to be giving back by running the NYC Marathon with Fred’s Team and raising money for leukemia research at Sloan Kettering.
Maybe one day the treatments for leukemia will not be so invasive and debilitating. Maybe one day the treatment will not put women into early menopause. Or put people at risk of secondary cancer. Perhaps we’ll be able to figure out what causes AML and prevent it all together.
In a time where so many people are in need,
and requests for donations seem a daily constant,
thank you for being here.
and requests for donations seem a daily constant,
thank you for being here.
- Published on
To say thank you to the team that saved my life after I was diagnosed with acute myeloid leukemia, I'm running the NYC Marathon on November 5th, 2017. I hope this story about my legs will inspire you to contribute to my goal of raising $5000 towards leukemia research at Sloan Kettering.
What is the one thing that’s going to get me across the finish line of the NYC Marathon on November 5th? Well, two things. My legs.
I have never been one to celebrate my legs. I wasn't blessed with "legs for days." It’s not that I don’t like them. But I never really loved them. Until I got sick.
In the summer of 2014, Aaron and I were working at our usual camp gig. Three weeks into the summer, I noticed a raised bump on each shin. They were painful to the touch, but not really more bothersome than that. I was working 14 hour days and at the culmination of staging a full-scale production of Avenue Q in less than three weeks. I figured I wasn’t dead, the bites would eventually calm down, and I’d go on my merry way.
A few days later, it was double day off. The bites had become circular discs of raised bumps. My feet and ankles were swollen and I felt like death.
Aaron took me to urgent care. The doctor looked at my legs, claimed she had never seen anything like them, but that she wasn’t worried as lots of counselors had come in over the summer with weird bites. She prescribed an antibiotic and told me to go to emergency if it wasn’t better in a couple of days.
The next morning I felt like I had the worst flu in the history of flus. Quite frankly, I wanted to go to sleep and never wake up again. That day happened to be RENT auditions, and there was no way I was missing out. I sat propped up on a couch with my team, and tried to look cheerful when the kids came in to sing and dance.
After lunch, I was done. My legs were oozing pus and I was in agony. I went to the infirmary and spent the night throwing up.
In the morning, the doctor took one look at me and sent me to hospital. Within twenty-four hours I was diagnosed with acute myeloid leukemia and taken to Danbury Hospital to start treatment.
Thanks to being dosed up morphine for my legs, I don’t actually remember the next two weeks. I have photographic evidence to prove that once I started chemo, something weird happened to my legs. It was like something out of Alien. The discs went yellow, and were surrounded by large red and purple splotches. If you want to see gross pictures (seriously, they're gross, you have been warned), you may click here.
I was poked and prodded and goggled at by dermatologists, specialists from infectious diseases, and a whole bunch of curious interns. The wounds were dressed and wrapped on a daily basis, and I still can’t believe I didn’t pass out every time they unwrapped the horror. I actually found it fascinating. Must have been the morphine.
My oncologist at Sloan Kettering later told me he thought I was hitting on him when I asked if he wanted to look at my legs. He had somehow missed it in my chart.
It is unnerving to have specialist after specialist they have never seen anything like your legs before. According to the stem-cell transplant team, I am one of about thirty patients in leukemia literature to present with this infected skin/bug bite thing. At first, my team were not sure if I could safely have a stem-cell transplant. The skin was biopsied and returned no conclusive result.
My legs took several months to heal, and post-transplant, my legs were the least of my worries.
I now have beautiful mandala-shaped scars on each leg. They are unlikely to go away, but I’m proud of them. Whatever caused them literally saved my life. I may never have coveted legs for days, but I have many days more thanks to my legs.
To celebrate three years post-transplant, my lovely legs and I are going to run the NYC Marathon. Will you help me say thank you to my team by helping me raise $5000 towards leukemia research at Sloan Kettering? We’re so close to my goal! If you can’t make a financial contribution, please consider sharing my story!
I have never been one to celebrate my legs. I wasn't blessed with "legs for days." It’s not that I don’t like them. But I never really loved them. Until I got sick.
In the summer of 2014, Aaron and I were working at our usual camp gig. Three weeks into the summer, I noticed a raised bump on each shin. They were painful to the touch, but not really more bothersome than that. I was working 14 hour days and at the culmination of staging a full-scale production of Avenue Q in less than three weeks. I figured I wasn’t dead, the bites would eventually calm down, and I’d go on my merry way.
A few days later, it was double day off. The bites had become circular discs of raised bumps. My feet and ankles were swollen and I felt like death.
Aaron took me to urgent care. The doctor looked at my legs, claimed she had never seen anything like them, but that she wasn’t worried as lots of counselors had come in over the summer with weird bites. She prescribed an antibiotic and told me to go to emergency if it wasn’t better in a couple of days.
The next morning I felt like I had the worst flu in the history of flus. Quite frankly, I wanted to go to sleep and never wake up again. That day happened to be RENT auditions, and there was no way I was missing out. I sat propped up on a couch with my team, and tried to look cheerful when the kids came in to sing and dance.
After lunch, I was done. My legs were oozing pus and I was in agony. I went to the infirmary and spent the night throwing up.
In the morning, the doctor took one look at me and sent me to hospital. Within twenty-four hours I was diagnosed with acute myeloid leukemia and taken to Danbury Hospital to start treatment.
Thanks to being dosed up morphine for my legs, I don’t actually remember the next two weeks. I have photographic evidence to prove that once I started chemo, something weird happened to my legs. It was like something out of Alien. The discs went yellow, and were surrounded by large red and purple splotches. If you want to see gross pictures (seriously, they're gross, you have been warned), you may click here.
I was poked and prodded and goggled at by dermatologists, specialists from infectious diseases, and a whole bunch of curious interns. The wounds were dressed and wrapped on a daily basis, and I still can’t believe I didn’t pass out every time they unwrapped the horror. I actually found it fascinating. Must have been the morphine.
My oncologist at Sloan Kettering later told me he thought I was hitting on him when I asked if he wanted to look at my legs. He had somehow missed it in my chart.
It is unnerving to have specialist after specialist they have never seen anything like your legs before. According to the stem-cell transplant team, I am one of about thirty patients in leukemia literature to present with this infected skin/bug bite thing. At first, my team were not sure if I could safely have a stem-cell transplant. The skin was biopsied and returned no conclusive result.
My legs took several months to heal, and post-transplant, my legs were the least of my worries.
I now have beautiful mandala-shaped scars on each leg. They are unlikely to go away, but I’m proud of them. Whatever caused them literally saved my life. I may never have coveted legs for days, but I have many days more thanks to my legs.
To celebrate three years post-transplant, my lovely legs and I are going to run the NYC Marathon. Will you help me say thank you to my team by helping me raise $5000 towards leukemia research at Sloan Kettering? We’re so close to my goal! If you can’t make a financial contribution, please consider sharing my story!
- Published on
Photo by Matt Neretin
One of the hardest things about cancer was losing my singing voice. The debilitating effects of radiation and chemo took away the top octave of my range.
During my recovery, I was introduced to a singing teacher who was also a cancer survivor. She promised me that, in time, my voice would return.
Progress has been slow and frustrating, but the more I have run in training for the NYC Marathon, the stronger my voice has become.
Last week, I was given the awesome opportunity of singing with the Buck's Rock Orchestra for the Tribute Show. The theme this year was "Dance Music," and the orchestra's contribution was "I Could Have Danced All Night" from My Fair Lady.
While I love me some Lerner and Loewe, it's not repertoire that is usually in my book. I'm more of a belter, and there's an E flat at the end of "I Could Have Danced All Night" that even pre-cancer me would not have loved.
Due to musical rehearsals, I did not have a chance to sing with the orchestra until the day before the concert. My phrasing was a mess. The high E flat was not pretty. But, it was exciting to be singing again.
Between rehearsal and the night of the show, I went for a nice long run. I warmed up my voice, put on my pretty new dress, and slipped into a pair of heels.
The gong rang thrice, and it was show time.
Standing on stage in front a Buck's Rock audience is the best. It is always a warm and forgiving crowd. It's so nice to get a cheer just from walking out on stage!
The song went great, and ya'll, I even hit the E flat! IT WAS THRILLING! I felt like I could have sung all night. Big thanks to Bruce and the Orchestra for inviting me to sing.
Definitely more running and singing to come!
During my recovery, I was introduced to a singing teacher who was also a cancer survivor. She promised me that, in time, my voice would return.
Progress has been slow and frustrating, but the more I have run in training for the NYC Marathon, the stronger my voice has become.
Last week, I was given the awesome opportunity of singing with the Buck's Rock Orchestra for the Tribute Show. The theme this year was "Dance Music," and the orchestra's contribution was "I Could Have Danced All Night" from My Fair Lady.
While I love me some Lerner and Loewe, it's not repertoire that is usually in my book. I'm more of a belter, and there's an E flat at the end of "I Could Have Danced All Night" that even pre-cancer me would not have loved.
Due to musical rehearsals, I did not have a chance to sing with the orchestra until the day before the concert. My phrasing was a mess. The high E flat was not pretty. But, it was exciting to be singing again.
Between rehearsal and the night of the show, I went for a nice long run. I warmed up my voice, put on my pretty new dress, and slipped into a pair of heels.
The gong rang thrice, and it was show time.
Standing on stage in front a Buck's Rock audience is the best. It is always a warm and forgiving crowd. It's so nice to get a cheer just from walking out on stage!
The song went great, and ya'll, I even hit the E flat! IT WAS THRILLING! I felt like I could have sung all night. Big thanks to Bruce and the Orchestra for inviting me to sing.
Definitely more running and singing to come!
We have nearly reached my goal of raising $5000 towards leukemia research at Memorial Sloan Kettering Cancer Center!
Can you help me over the finish line and make cancer history?
Can you help me over the finish line and make cancer history?
- Published on
I’m a city girl born and bred. I’ve been running concrete roads since I was thirteen and have learnt to navigate the dangers of urban outdoor exercise. Always run when it’s light, stay in well-populated areas, be aware of your surroundings, keep an ear out for cars/predatory assholes.
The idea of running in the Connecticut woods seems idyllic. Dirt trails through pine forests that open up to paved roads through rolling green hills, pastures dotted with pretty red and white barns and farmhouses, and more delicious pine forest.
For the past month, I’ve been loving my runs in New Milford, Connecticut. Apart from the humidity and those rolling green hills — they feel so much steeper when you’re running them — my training runs through the woods have been a true delight.
Except for one thing. Bears. Or at least the possibility of them.
In the spring, my friend Bev, New Milford local and resident Unlocking Litchfield blogger, posted about running with a can bear spray. Uh oh... Do I need to add bear spray to my list of running essentials?! When I arrived at camp, I asked how safe it was for me to be running on my own. Bev said if I played music out loud while I ran, the music should be enough of a bear deterrent.
Then last Monday, Aaron and I were driving along 202. It was the middle of the day, with plenty of cars around, and we spotted an enormous black bear pacing up and down the side of the road.
It’s one thing to see a bear from the (relative) safety of your car. It’s entirely another thing to imagine seeing one when you’re out trying to enjoy an early morning jog.
I managed to get out for an 8.5km run on Tuesday, but I was anxious the whole time about encountering that bear. With my terrible long distance vision, every large mailbox along the road was a bear waiting to leap out and wreak havoc on my pace.
There were several bear sightings last night, and this morning I was even more nervous for my long run. I managed another 16.5km, and except for signs indicating Bear Hill Road, Little Bear Road, and Bear Lane, there were thankfully no bears in sight.
Throughout my runs I've been keeping a steady stream of show tunes blaring from the phone in my pocket. Whether it's the noise of me huffing and puffing down the road, or the fact that bears just don't dig the Lin Manuel Miranda mixtape at 7.30 in the morning, let’s hope my training continues to only involve Lyons and timers!
The idea of running in the Connecticut woods seems idyllic. Dirt trails through pine forests that open up to paved roads through rolling green hills, pastures dotted with pretty red and white barns and farmhouses, and more delicious pine forest.
For the past month, I’ve been loving my runs in New Milford, Connecticut. Apart from the humidity and those rolling green hills — they feel so much steeper when you’re running them — my training runs through the woods have been a true delight.
Except for one thing. Bears. Or at least the possibility of them.
In the spring, my friend Bev, New Milford local and resident Unlocking Litchfield blogger, posted about running with a can bear spray. Uh oh... Do I need to add bear spray to my list of running essentials?! When I arrived at camp, I asked how safe it was for me to be running on my own. Bev said if I played music out loud while I ran, the music should be enough of a bear deterrent.
Then last Monday, Aaron and I were driving along 202. It was the middle of the day, with plenty of cars around, and we spotted an enormous black bear pacing up and down the side of the road.
It’s one thing to see a bear from the (relative) safety of your car. It’s entirely another thing to imagine seeing one when you’re out trying to enjoy an early morning jog.
I managed to get out for an 8.5km run on Tuesday, but I was anxious the whole time about encountering that bear. With my terrible long distance vision, every large mailbox along the road was a bear waiting to leap out and wreak havoc on my pace.
There were several bear sightings last night, and this morning I was even more nervous for my long run. I managed another 16.5km, and except for signs indicating Bear Hill Road, Little Bear Road, and Bear Lane, there were thankfully no bears in sight.
Throughout my runs I've been keeping a steady stream of show tunes blaring from the phone in my pocket. Whether it's the noise of me huffing and puffing down the road, or the fact that bears just don't dig the Lin Manuel Miranda mixtape at 7.30 in the morning, let’s hope my training continues to only involve Lyons and timers!
In July 2014, I was diagnosed with acute myeloid leukemia. Three years post-transplant, I’m running the NYC Marathon to help raise research funds for the team that saved my life. Can you donate to Fred’s Team and help me raise $5000 towards making cancer history?
- Published on
Imagine you have just moved to New York City. You are excited to try out all the restaurants, go to the theatre, and ride in a hole in the ground!
And then you get cancer. And even though the treatment will be done by Christmas, you will be told that for 100 days following your stem cell transplant, you are not permitted/able to do any of the following:
You are constantly tired. Small tasks, such as getting out of bed, utterly fatigue you. If you would like more information on your energy levels during this period, check out the Spoon Theory.
All food must be cooked at home to ensure it is thoroughly washed and cooked. Raw food is strictly prohibited. You are allowed the occasional pizza, but you must ask the pizza place to leave the pizza unsliced (less chance of contamination).
Anyone who visits you must not have been sick in the previous week, or been in contact with anyone who has been sick.
When you have the energy and will to leave the house, you must wear a mask covering your nose and mouth. You are bald from your recent chemo and radiation treatments. People will stop you in the street and supermarket to ask if you are sick.
During this time, you will be required to visit the hospital on a weekly basis for blood work and check-ups. At each appointment you will be poked and prodded and assessed. If your counts dip, further appointments may be required for extra tests or blood transfusions.
This is life for the first 100 days or so after a stem cell transplant. The 100 days is an approximate marker of the when the immune system starts to adequately recover and function again.
The recovery of my immune system took a little longer. From November 2014 to around May 2015, I was living in a bubble that consisted of our apartment, and the hospital. It was like I had been taken to the greatest candy store in the world and told I had to wait outside.
Nearly three years later, I am so grateful to be back to “normal.” I can work! I can eat at all the restaurants! I can see all the shows! I can ride in a hole in the ground! I can go to summer camp and hang out with germ-ridden children!
MSK continues their incredible research into improving treatments for leukemia. Just this week, new developments in the understanding of bacteria and antibiotics were announced.
Today is 100 days until the NYC Marathon. I'm running with Fred's Team, MSK's athletic fundraising program. Thanks to your amazing generosity, we have already smashed my goal of raising $3500 towards leukemia research at MSK.
Can we make it to $5000 and potentially make life in the 100 days post-transplant easier for the next person?
Visit http://mskcc.convio.net/goto/luisalyons to make a donation!
And then you get cancer. And even though the treatment will be done by Christmas, you will be told that for 100 days following your stem cell transplant, you are not permitted/able to do any of the following:
- Eat take-out
- Ride mass transit
- Be in spaces with crowds of people
- Earn a living.
You are constantly tired. Small tasks, such as getting out of bed, utterly fatigue you. If you would like more information on your energy levels during this period, check out the Spoon Theory.
All food must be cooked at home to ensure it is thoroughly washed and cooked. Raw food is strictly prohibited. You are allowed the occasional pizza, but you must ask the pizza place to leave the pizza unsliced (less chance of contamination).
Anyone who visits you must not have been sick in the previous week, or been in contact with anyone who has been sick.
When you have the energy and will to leave the house, you must wear a mask covering your nose and mouth. You are bald from your recent chemo and radiation treatments. People will stop you in the street and supermarket to ask if you are sick.
During this time, you will be required to visit the hospital on a weekly basis for blood work and check-ups. At each appointment you will be poked and prodded and assessed. If your counts dip, further appointments may be required for extra tests or blood transfusions.
This is life for the first 100 days or so after a stem cell transplant. The 100 days is an approximate marker of the when the immune system starts to adequately recover and function again.
The recovery of my immune system took a little longer. From November 2014 to around May 2015, I was living in a bubble that consisted of our apartment, and the hospital. It was like I had been taken to the greatest candy store in the world and told I had to wait outside.
Nearly three years later, I am so grateful to be back to “normal.” I can work! I can eat at all the restaurants! I can see all the shows! I can ride in a hole in the ground! I can go to summer camp and hang out with germ-ridden children!
MSK continues their incredible research into improving treatments for leukemia. Just this week, new developments in the understanding of bacteria and antibiotics were announced.
Today is 100 days until the NYC Marathon. I'm running with Fred's Team, MSK's athletic fundraising program. Thanks to your amazing generosity, we have already smashed my goal of raising $3500 towards leukemia research at MSK.
Can we make it to $5000 and potentially make life in the 100 days post-transplant easier for the next person?
Visit http://mskcc.convio.net/goto/luisalyons to make a donation!