- 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
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?
- 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!
- Published on
I was a non-smoking rarely drinking vegetarian who exercised regularly and meditated. On July 23, 2014, six weeks before my 30th birthday, I was diagnosed with acute myeloid leukemia. A fast acting blood cancer that more commonly affects men in their sixties.
Although there have been improvements, the treatment for AML has not changed much in the past thirty years. It is painful and debilitating, requiring endless needles, scans, and constant monitoring.
Following a life-saving stem cell transplant at Memorial Sloan Kettering Cancer Center (MSK) in November 2014, I underwent a long and difficult recovery period. I lost weight, gained it all back and then some. I went into early onset menopause. My fingernails fell off one by one. I developed sores on the soles of my feet. I had depression, anxiety, and fits of rage. I lost my libido. I couldn't work. I couldn't ride the subway. Couldn't eat take out. Couldn't go to the theatre. I lost an octave in my singing voice. A lot of the time I just felt really fucking tired.
For much of the past three years I have felt robbed. I did all the "right things" and I still got blood cancer. It took me out of commission for almost two years. The emotional and mental side effects are an ongoing battle.
While the five-year survival rate for leukemia in general is over 60%, the five-year survival rate for AML patients is currently at about 26%. We still do not know what causes leukemia.
I am alive today thanks to the amazing work of my team at MSK. Their research is ongoing, and expensive. Imagine if we could find a way to test marrow without painful needles? Or provide treatment that isn't so debilitating? What if we knew what causes leukemia in the first place and could prevent it from occurring again? What if we could make leukemia a disease of the past?
This is why, on November 5, 2017, a week after the third anniversary of my transplant, I’m going to be running the NYC Marathon. You can support me by donating to Fred's Team. Your donation will ensure the amazing folk at MSK can continue their research in making leukemia history.
Will you join me?
Although there have been improvements, the treatment for AML has not changed much in the past thirty years. It is painful and debilitating, requiring endless needles, scans, and constant monitoring.
Following a life-saving stem cell transplant at Memorial Sloan Kettering Cancer Center (MSK) in November 2014, I underwent a long and difficult recovery period. I lost weight, gained it all back and then some. I went into early onset menopause. My fingernails fell off one by one. I developed sores on the soles of my feet. I had depression, anxiety, and fits of rage. I lost my libido. I couldn't work. I couldn't ride the subway. Couldn't eat take out. Couldn't go to the theatre. I lost an octave in my singing voice. A lot of the time I just felt really fucking tired.
For much of the past three years I have felt robbed. I did all the "right things" and I still got blood cancer. It took me out of commission for almost two years. The emotional and mental side effects are an ongoing battle.
While the five-year survival rate for leukemia in general is over 60%, the five-year survival rate for AML patients is currently at about 26%. We still do not know what causes leukemia.
I am alive today thanks to the amazing work of my team at MSK. Their research is ongoing, and expensive. Imagine if we could find a way to test marrow without painful needles? Or provide treatment that isn't so debilitating? What if we knew what causes leukemia in the first place and could prevent it from occurring again? What if we could make leukemia a disease of the past?
This is why, on November 5, 2017, a week after the third anniversary of my transplant, I’m going to be running the NYC Marathon. You can support me by donating to Fred's Team. Your donation will ensure the amazing folk at MSK can continue their research in making leukemia history.
Will you join me?
- Published on
I have always loved running.
Three years ago I was training for a half marathon
And then I got cancer.
A year-and-a-half ago I was signed up to run a 5km race
Then had to drop out two days before because my counts dropped too low.
Nine months ago I signed up with a personal trainer
She whipped my butt but she got me moving again.
And on Saturday
After 23 weeks of training
I ran a half marathon
And it felt So. Damn. Good.
The past few years have been such a rollercoaster.
Not just physically, but emotionally too
Depression and anxiety have been slaying me
I have had trouble getting out of bed
And then I had panic attacks before heading out the front door.
But I always feel good when I’m running
The aches and pains that bother me when I’m not moving
Seem to go away when I’m running
(Knock on wood)
I’ve been training with the Nike+ Run Club App
It’s such an incredible resource (and free!)
You plug in the date of your race,
Your level of fitness and experience
And it builds a training program
That adapts itself as you complete (or miss) the runs.
It got to me a level of fitness I’ve never had before.
Mid-way through the training
A friend sent me a copy of Born to Run
It was a game changer
It got me thinking about running in a whole new way
I went from enjoying running
To being passionate about it.
Race day was so thrilling
The sea of people in active wear
The people who come to cheer on their friends and family members and perfect strangers
The homemade signs
You’re running better than our government!
You’re almost at Nathan’s! and
Tap to Power Up! beneath pictures of Mario Kart mushrooms and stars
The volunteers at the fluid stations
Pouring cups of water and gatorade
Cheering the runners as we zip through
Looking great runners! Keep it up!
The bands dotted sporadically throughout the course
Rock bands and jazz bands, and at one point, a lone fiddle player
The way the runners encourage each other
As we passed mile markers, a runner would call out the mile number
And everyone would cheer.
In the last 800m of the race
My playlist switched to “Put on Your Sunday Clothes” from Hello, Dolly!
Out there, there’s a world outside of Yonkers!
I got so emotional
I’m doing the things! Running feels amazing again!
I’m healthy and I’m here
It feels like forever since I've felt this good.
I was tired at the end
Needed a nap and two dinners,
But I wasn’t dead
I could actually walk the next day without pain and
Two days later I was ready for another run.
Yesterday, I did my first training run for the NYC Marathon.
Bring it on.
Three years ago I was training for a half marathon
And then I got cancer.
A year-and-a-half ago I was signed up to run a 5km race
Then had to drop out two days before because my counts dropped too low.
Nine months ago I signed up with a personal trainer
She whipped my butt but she got me moving again.
And on Saturday
After 23 weeks of training
I ran a half marathon
And it felt So. Damn. Good.
The past few years have been such a rollercoaster.
Not just physically, but emotionally too
Depression and anxiety have been slaying me
I have had trouble getting out of bed
And then I had panic attacks before heading out the front door.
But I always feel good when I’m running
The aches and pains that bother me when I’m not moving
Seem to go away when I’m running
(Knock on wood)
I’ve been training with the Nike+ Run Club App
It’s such an incredible resource (and free!)
You plug in the date of your race,
Your level of fitness and experience
And it builds a training program
That adapts itself as you complete (or miss) the runs.
It got to me a level of fitness I’ve never had before.
Mid-way through the training
A friend sent me a copy of Born to Run
It was a game changer
It got me thinking about running in a whole new way
I went from enjoying running
To being passionate about it.
Race day was so thrilling
The sea of people in active wear
The people who come to cheer on their friends and family members and perfect strangers
The homemade signs
You’re running better than our government!
You’re almost at Nathan’s! and
Tap to Power Up! beneath pictures of Mario Kart mushrooms and stars
The volunteers at the fluid stations
Pouring cups of water and gatorade
Cheering the runners as we zip through
Looking great runners! Keep it up!
The bands dotted sporadically throughout the course
Rock bands and jazz bands, and at one point, a lone fiddle player
The way the runners encourage each other
As we passed mile markers, a runner would call out the mile number
And everyone would cheer.
In the last 800m of the race
My playlist switched to “Put on Your Sunday Clothes” from Hello, Dolly!
Out there, there’s a world outside of Yonkers!
I got so emotional
I’m doing the things! Running feels amazing again!
I’m healthy and I’m here
It feels like forever since I've felt this good.
I was tired at the end
Needed a nap and two dinners,
But I wasn’t dead
I could actually walk the next day without pain and
Two days later I was ready for another run.
Yesterday, I did my first training run for the NYC Marathon.
Bring it on.
- Published on
Today was a momentous day: my two-and-a-half year post-transplant check-up.
It was surreal going to the hospital after a full six months off from appointments. For one thing, the new Q line makes the trip infinitely faster - one train instead of two, and 50 minutes travel time instead of an hour and a half. We've come a long way from Aaron driving a bald, tired, and often cranky Lulu across New York City!
After the routine blood work and vitals check, I was ecstatic to see that my weight has finally gone back down to my "normal" pre-cancer level. Being in early menopause, losing weight has become really difficult. Eating well and a mountain of running have finally helped to shift it.
I had my next set of vaccinations, and then we sat around and waited for two hours to see my doctor.
I always have a nervous anxiety in the lead up to my check-ups. Fear of relapse, fear of being told my counts are playing up again, fear that I'll be trapped inside the hospital for ever. But today, I was nervous excited. This is the first time my doctors will have seen me well. Even for my two year check up, I had a bad cold and was not feeling my finest.
Today, two-and-a-half years post-transplant, I got to tell my medical team that I'm running the Brooklyn Half Marathon in a few weeks. Then I got to tell them that I've signed up to run the New York Marathon, which coincidentally takes place around the third anniversary of my transplant, and I'm going to be raising funds for leukemia research at Sloan Kettering. My nurse practitioner got all teary. My usually unflappable doctor told me that I had inspired her to take up running again. It was the best way to say thank you to my team for saving my life.
My counts are looking great, I'm scheduled to finish up my re-vaccinations, and I am officially being moved over to the Survivorship Team for future check-ups. All things going well (knock on wood), I'll have my three year check-up in November, and then I'll be down to one visit a year! And no more bone marrow biopsies!
The past two and a half years have been an uphill slog.
Today, I feel awesome. Tonight, I'm working on Broadway (ok, I'm still in front of house... but baby steps. I had a stem cell transplant not so long ago!). In a few weeks I'm running a half marathon. In six months, I'm running the New York City marathon, baby!! In a year... who knows?
Right now, I'm sitting in the Rose Main Reading at the New York Public Library. Afternoon sunlight is streaming through the windows, and in between sentences I'm staring up at the ornate cloud-painted ceiling. And I feel so very lucky to be here.
It was surreal going to the hospital after a full six months off from appointments. For one thing, the new Q line makes the trip infinitely faster - one train instead of two, and 50 minutes travel time instead of an hour and a half. We've come a long way from Aaron driving a bald, tired, and often cranky Lulu across New York City!
After the routine blood work and vitals check, I was ecstatic to see that my weight has finally gone back down to my "normal" pre-cancer level. Being in early menopause, losing weight has become really difficult. Eating well and a mountain of running have finally helped to shift it.
I had my next set of vaccinations, and then we sat around and waited for two hours to see my doctor.
I always have a nervous anxiety in the lead up to my check-ups. Fear of relapse, fear of being told my counts are playing up again, fear that I'll be trapped inside the hospital for ever. But today, I was nervous excited. This is the first time my doctors will have seen me well. Even for my two year check up, I had a bad cold and was not feeling my finest.
Today, two-and-a-half years post-transplant, I got to tell my medical team that I'm running the Brooklyn Half Marathon in a few weeks. Then I got to tell them that I've signed up to run the New York Marathon, which coincidentally takes place around the third anniversary of my transplant, and I'm going to be raising funds for leukemia research at Sloan Kettering. My nurse practitioner got all teary. My usually unflappable doctor told me that I had inspired her to take up running again. It was the best way to say thank you to my team for saving my life.
My counts are looking great, I'm scheduled to finish up my re-vaccinations, and I am officially being moved over to the Survivorship Team for future check-ups. All things going well (knock on wood), I'll have my three year check-up in November, and then I'll be down to one visit a year! And no more bone marrow biopsies!
The past two and a half years have been an uphill slog.
Today, I feel awesome. Tonight, I'm working on Broadway (ok, I'm still in front of house... but baby steps. I had a stem cell transplant not so long ago!). In a few weeks I'm running a half marathon. In six months, I'm running the New York City marathon, baby!! In a year... who knows?
Right now, I'm sitting in the Rose Main Reading at the New York Public Library. Afternoon sunlight is streaming through the windows, and in between sentences I'm staring up at the ornate cloud-painted ceiling. And I feel so very lucky to be here.
- Published on
It’s a bleak and dismal day in New York. The mercury deigned to get out of bed and rise to 4C/39F, but it’s very seriously considering just going back to sleep and leaving the rest of us to freeze. In solidarity, the rain is cold and wet and alternating between liquid and icy particles. It’s a day for hot chocolates and snuggling under a doona and reading a good novel.
My running training app does not factor in weather. It cares not for snow storms or rainy days or 40C/104F days. The delightful thing is that 10 weeks into my training program for the Brooklyn Half (less than two months to go!), I’m finally at a point where I too am not deterred by the weather. My muscles want to go running. They feel better when they run. Running feels good.
So, even though looking out the window was not enticing for a run, I put on my sneakers, donned a bright pink beanie, and headed to the park.
On a nice day, Prospect Park is filled with hundreds of runners and walkers and bikers and rollerbladers. Today, I counted a grand total of five other people. We all smiled and waved as we passed each other. You’re out in this too! Look at us go!
While humans were scarce, the geese were out in force. Heads down, bums up, they were waddling through the mud collecting juicy worms bought up by the rain.
By the end of the run, my jacket was drenched from the rain, but I felt warm and fuzzy. Running feels good again! 5.5km feels easy again! And like the ducks and geese, I’m celebrating in the rain.
My running training app does not factor in weather. It cares not for snow storms or rainy days or 40C/104F days. The delightful thing is that 10 weeks into my training program for the Brooklyn Half (less than two months to go!), I’m finally at a point where I too am not deterred by the weather. My muscles want to go running. They feel better when they run. Running feels good.
So, even though looking out the window was not enticing for a run, I put on my sneakers, donned a bright pink beanie, and headed to the park.
On a nice day, Prospect Park is filled with hundreds of runners and walkers and bikers and rollerbladers. Today, I counted a grand total of five other people. We all smiled and waved as we passed each other. You’re out in this too! Look at us go!
While humans were scarce, the geese were out in force. Heads down, bums up, they were waddling through the mud collecting juicy worms bought up by the rain.
By the end of the run, my jacket was drenched from the rain, but I felt warm and fuzzy. Running feels good again! 5.5km feels easy again! And like the ducks and geese, I’m celebrating in the rain.