ken macinnis

superamit:

Many of you have asked, so here’s what’s going on with me.
WHAT HAPPENED BEFORE
8/1979: Born. Grew up in CT, built a killer eraser collection, fell in love with computers.
Left college to start a company. Fell hard. Fled to India for 3 months.
Started 2nd company. Learned to be an adult. Fell in love with NYC.
Moved to SF, discovered burritos & some of my fave people on Earth.
9/2011: Got diagnosed with Leukemia!
Cried. Went through 3 cycles of chemo. Hurt. Thought hard about what I want out of life. Grew up a second time.
TODAY
… After over 100 drives organized by friends, family, and strangers, celebrity call-outs, a bazillion reblogs (7000+!), tweets, and Facebook posts, press, fundraising and international drives organized by tireless friends, and a couple painful false starts, I’ve got a 10/10 matched donor!
You all literally helped save my life. (And the lives of many others.)
WHAT HAPPENS NEXT
Tomorrow, I’ll be admitted to Dana Farber in Boston for 4-5 weeks.
First I’ll get a second Hickman line to allow direct access to my heart (for meds and for nutrients if I’m not able to eat). Over the next week, the docs blast my body with a stiff chemo cocktail to try and eradicate all traces of cancer cells. In the process, the immune system I was born with, and my body’s ability to make blood, are destroyed.
Next Friday, I get my donor’s stem cells by IV. I start on immunosuppressants to prevent my body from rejecting them (I’ll be on them for 12-18 months). For these weeks I’ve no immune system, so I’m severely vulnerable to viruses and bacteria. My hospital room and hallway become my world.
Meanwhile, the stem cells make their way to my bone marrow and, with some luck, start producing platelets, red blood cells, and white blood cells. At this point, my blood type changes to the blood type of my donor. And my blood will now have my donor’s DNA, not my own.
This is science fiction stuff. I can hardly believe it’s even possible, and there’s lots of chances for things to go wrong. It’s frightening.
AFTER THE TRANSPLANT
Recovery to a new state of “normal” takes about a year, but there’s a few storm clouds hovering:
My immune system is new, like a baby’s. I’m prone to getting sick.
Just as with any organ transplant, there’s a chance of rejection. Except in this case, it’s my blood that’s the foreign body, and it touches every organ. They call it graft-vs-host-disease and it can cause health issues and organ complications for the rest of my life.
Successful transplant or not, Leukemia can relapse. Stubborn mofo.
Overall, 75% of AML transplant patients survive year one, 50% make it through year five. My odds are a little better since I’m young.
THE GREAT NEWS
I’ve got a long road ahead. But I’ve got a donor & amazing family & friends. A few months ago I didn’t have many options. Today I have a plan.
I am alive. I start tomorrow. Wish me luck!
Thank you.

Many of you have asked, so here’s what’s going on with me.

WHAT HAPPENED BEFORE

8/1979: Born. Grew up in CT, built a killer eraser collection, fell in love with computers.

Left college to start a company. Fell hard. Fled to India for 3 months.

Started 2nd company. Learned to be an adult. Fell in love with NYC.

Moved to SF, discovered burritos & some of my fave people on Earth.

9/2011: Got diagnosed with Leukemia!

Cried. Went through 3 cycles of chemo. Hurt. Thought hard about what I want out of life. Grew up a second time.

TODAY

… After over 100 drives organized by friends, family, and strangers, celebrity call-outs, a bazillion reblogs (7000+!), tweets, and Facebook posts, press, fundraising and international drives organized by tireless friends, and a couple painful false starts, I’ve got a 10/10 matched donor!

You all literally helped save my life. (And the lives of many others.)

WHAT HAPPENS NEXT

Tomorrow, I’ll be admitted to Dana Farber in Boston for 4-5 weeks.

First I’ll get a second Hickman line to allow direct access to my heart (for meds and for nutrients if I’m not able to eat). Over the next week, the docs blast my body with a stiff chemo cocktail to try and eradicate all traces of cancer cells. In the process, the immune system I was born with, and my body’s ability to make blood, are destroyed.

Next Friday, I get my donor’s stem cells by IV. I start on immunosuppressants to prevent my body from rejecting them (I’ll be on them for 12-18 months). For these weeks I’ve no immune system, so I’m severely vulnerable to viruses and bacteria. My hospital room and hallway become my world.

Meanwhile, the stem cells make their way to my bone marrow and, with some luck, start producing platelets, red blood cells, and white blood cells. At this point, my blood type changes to the blood type of my donor. And my blood will now have my donor’s DNA, not my own.

This is science fiction stuff. I can hardly believe it’s even possible, and there’s lots of chances for things to go wrong. It’s frightening.

AFTER THE TRANSPLANT

Recovery to a new state of “normal” takes about a year, but there’s a few storm clouds hovering:

My immune system is new, like a baby’s. I’m prone to getting sick.

Just as with any organ transplant, there’s a chance of rejection. Except in this case, it’s my blood that’s the foreign body, and it touches every organ. They call it graft-vs-host-disease and it can cause health issues and organ complications for the rest of my life.

Successful transplant or not, Leukemia can relapse. Stubborn mofo.

Overall, 75% of AML transplant patients survive year one, 50% make it through year five. My odds are a little better since I’m young.

THE GREAT NEWS

I’ve got a long road ahead. But I’ve got a donor & amazing family & friends. A few months ago I didn’t have many options. Today I have a plan.

I am alive. I start tomorrow. Wish me luck!

Thank you.