- 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?