- 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 Shannon Bailey
“This was a real, truly live place. And I remember that some of it wasn’t very nice, but most of it was beautiful…”
We spent the past two months
Making art and teaching and being a part of
A glorious artistic commune in the woods
Our merry old land
That “miraculously” appears every summer in the Connecticut woods
Where 6 summers ago
I fell in love with my husband
Beneath shooting stars and wrapped in the smell of peppermint.
For the first time in eight summers I dreaded coming back
All my fears were confirmed, and then some
But it was still Buck's Rock.
During team building
We built statues from cardboard and string
A perfect metaphor for the way all the shops come together
To create something
Out of nothing
The temperatures were mercifully milder
It rained on more Saturdays than I can remember
We only had 2 or 3 lunches on the lawn
The gong fell off its hinges
My super power of being immune to mosquitos was temporary
I was eaten alive and covered in large red welts and bites
I still can't quite believe we staged a full-scale production of The Who's Tommy in 19 days from start to finish.
I still hate the musical, but I love our show
Especially our glorious team.
At the end of sitzprobe, a bunch of campers came up to me,
Grinning from ear to ear
Ecstatic at having sung with a rock band
They hugged and thanked me for getting them there,
In all my shows at Buck’s Rock,
That has never happened before.
Our cast were tight-knit and weeks after the show had ended
Could be found singing the songs with ukuleles on the lawn.
I can't believe what an uphill battle it was to put together The Wizard of Oz.
I thought it would be easy.
It’s The Wizard of Oz. Who doesn’t know The Wizard of Oz?!
Turns out, lots of people.
Not having a full cast until the week of the show
Not having a full pit until the day before the show
Having to deal with difficult behavior from grown-ups.
I'm so proud of the kids for whom this was their first time on stage, ever.
The kids who came up to me and told me they were scared to be in the musical but now they can't wait next year because they want to do it again.
Seeing kids learning to express themselves
Helping them find their voices
Teaches me so much about myself
As a person, as a performer.
The cliche is unbelievably true
If you become a teacher,
By your pupils you’ll be taught.
I loved the evening activities
The hilarity of the slip n’ slide
The fierceness of thumb wars and staring contests
Having my tea leaves read by an earnest and beautiful camper
A multitude of plays and concerts and recitals
Inspiring, funny, moving, intense.
The honor of being a CIT-assist
Going to snack on the basketball court
Being able to go to the Falconridge Folk Festival
Watching kids learn to adult,
They stumble and fall and fly
My secret santa, Nate
Gifted me the most beautiful portrait
I desperately wish it could be my headshot
It is exactly who I want to be.
Days off, a welcome break from the intensity
Picnicking at Lake Warramug
Ice cream in Kent
Camping in Housatonic State Park because Macedonia Brook was closed
When we’re surrounded by pine forest
I want to abandon everything and
Build a cob cottage and
Become a park ranger and learn about eco systems and soil and
Be the kind of person who can identify all the different kinds of fungi
This summer,
I ran just over 190km through the Connecticut woods.
I taught voice lessons.
I sang with an orchestra.
I played in a flute choir.
At night
Fireflies danced in the dusk
Bioluminescent bums twinkling
I would fall asleep to a
Calamitous frog and cricket choir
If someone had told me, almost ten years ago,
That I would still be coming back
Year after year
And be married to a Buck's Rocker
I wouldn’t have believed them
I am so lucky to have found this place.
And here we are
And then, it is gone.
The end.
Making art and teaching and being a part of
A glorious artistic commune in the woods
Our merry old land
That “miraculously” appears every summer in the Connecticut woods
Where 6 summers ago
I fell in love with my husband
Beneath shooting stars and wrapped in the smell of peppermint.
For the first time in eight summers I dreaded coming back
All my fears were confirmed, and then some
But it was still Buck's Rock.
During team building
We built statues from cardboard and string
A perfect metaphor for the way all the shops come together
To create something
Out of nothing
The temperatures were mercifully milder
It rained on more Saturdays than I can remember
We only had 2 or 3 lunches on the lawn
The gong fell off its hinges
My super power of being immune to mosquitos was temporary
I was eaten alive and covered in large red welts and bites
I still can't quite believe we staged a full-scale production of The Who's Tommy in 19 days from start to finish.
I still hate the musical, but I love our show
Especially our glorious team.
At the end of sitzprobe, a bunch of campers came up to me,
Grinning from ear to ear
Ecstatic at having sung with a rock band
They hugged and thanked me for getting them there,
In all my shows at Buck’s Rock,
That has never happened before.
Our cast were tight-knit and weeks after the show had ended
Could be found singing the songs with ukuleles on the lawn.
I can't believe what an uphill battle it was to put together The Wizard of Oz.
I thought it would be easy.
It’s The Wizard of Oz. Who doesn’t know The Wizard of Oz?!
Turns out, lots of people.
Not having a full cast until the week of the show
Not having a full pit until the day before the show
Having to deal with difficult behavior from grown-ups.
I'm so proud of the kids for whom this was their first time on stage, ever.
The kids who came up to me and told me they were scared to be in the musical but now they can't wait next year because they want to do it again.
Seeing kids learning to express themselves
Helping them find their voices
Teaches me so much about myself
As a person, as a performer.
The cliche is unbelievably true
If you become a teacher,
By your pupils you’ll be taught.
I loved the evening activities
The hilarity of the slip n’ slide
The fierceness of thumb wars and staring contests
Having my tea leaves read by an earnest and beautiful camper
A multitude of plays and concerts and recitals
Inspiring, funny, moving, intense.
The honor of being a CIT-assist
Going to snack on the basketball court
Being able to go to the Falconridge Folk Festival
Watching kids learn to adult,
They stumble and fall and fly
My secret santa, Nate
Gifted me the most beautiful portrait
I desperately wish it could be my headshot
It is exactly who I want to be.
Days off, a welcome break from the intensity
Picnicking at Lake Warramug
Ice cream in Kent
Camping in Housatonic State Park because Macedonia Brook was closed
When we’re surrounded by pine forest
I want to abandon everything and
Build a cob cottage and
Become a park ranger and learn about eco systems and soil and
Be the kind of person who can identify all the different kinds of fungi
This summer,
I ran just over 190km through the Connecticut woods.
I taught voice lessons.
I sang with an orchestra.
I played in a flute choir.
At night
Fireflies danced in the dusk
Bioluminescent bums twinkling
I would fall asleep to a
Calamitous frog and cricket choir
If someone had told me, almost ten years ago,
That I would still be coming back
Year after year
And be married to a Buck's Rocker
I wouldn’t have believed them
I am so lucky to have found this place.
And here we are
And then, it is gone.
The end.
- 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?