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.
This is such incredible and frightening news. I wish you all the best, Amit.
I’ve been watching the Vietnam HD miniseries on the History channel since yesterday. It’s been really riveting with the way they intertwine the personal histories. Also cool: how they had different voice actors read parts of the interview with the people. At first I didn’t get it and it tends to chop up the flow of the story but when it’s combined with the footage it really transports you to the past.
It’s also funny how I will learn about a thing from the television but not from either of my parents. To be fair I’ve heard most of their stories about it and how my dad “just missed” it (I don’t know how accurate that is) but I’m more interested in what happened over there and not here.
Can anyone recommend a good book on Vietnam?
(Source: gogreyhound)
Photojojo’s very own Amit (he founded Photojojo!) recently found out that he has leukemia.
He needs to find a bone marrow match - particularly of South Asian descent (Indian, Pakistani, Sri Lankan etc) - to cure it.
Help him find a match! Tomorrow, we’ll be taking part in a swabbing party in San Francisco. We want you to come.
If you’re not in SF, you can still help Amit & others cure their leukemia!
- Get a swab test. It’s free, painless & takes 2 seconds.
- Organize a photo booth swabbing party! [See: DIY photo booth tutorial]
- Spread the word! Share this link. Join the Facebook group.
- If you’re outside the U.S., get in touch here.
- Or donate to the National Bone Marrow Registry.
In a fucking rut creatively. I want a schedule to break out of. I want to leave the state for a few days. I get vacation time now, maybe I should go to Baltimore and act out scenes from the Wire by myself (though I’m sure the good residents have already been subjected to that more than a few times). I would really like it if things made sense someday soon.
“Set goals! Be Here! Be Safe! Let Go and Move On! Be Honest! Have Fun!”
“Gentlemen, this is advertising.” I keep trying to remember every place I’ve biked to for the calculations but I fall asleep before fingers hit the keyboard. Lights are blinking and neighbors are yelling and I’ve left twice and nearly been killed a dozen times today. He slapped her ass on the stairs, I think I know why now. It doesn’t make me feel any better about the situation. Tan and scummy; put a shirt on. (Who the fuck am I to talk?) Dirty shorts, I still feel too young for 30 Rock (30, duh.) Ride to Texas one day, complete a century. It’s all bullshit
He stayed in there for weeks listening to Simon and Garfunkle’s “I Am A Rock” and looking out the window mouthing the words to the people on the boardwalk. June and July shone on, indefatigable. He would not become a transformer.
I would do almost anything to escape this cold sad cave full of diet coke and the ephemera from our past family life. Were it possible I would throw open the windows all day; let the outside soak and creep in. I’d allow wildlife to make its home with me, to provide me with real company instead the of the ghost of the parent I now spend my time with.
