Amit Gupta Needs You

[superamit]

Every so often, I get to read an email like this and it MAKES MY WHOLE FREAKING WEEK.

Thank you, Scott, for doing the right thing.

And thanks to everyone who registered, everyone who held drives, and especially everyone who’s gone on to donate stem cells over the past two years.

You are great.

[amitguptaneedsyou]

!!!

[fuckyeahamitgupta]

(via WANTED: Brown Bones Benefit Party - Eventbrite)

Our friend Amit, one of the nicest and most remarkable people we know, has recently been diagnosed with leukemia. He urgently needs to find someone who can donate bone marrow to help him in his fight!

To fight leukemia, he needs matching bone marrow. Despite 9.5 million people on the National Registry, South Asians are severely underrepresented.  The odds of an Indian minority finding a match are 1 in 20,000.

How can you help?   1. The most important thing you can do is get anyone you know of South Asian descent to get tested.The test is super fast, easy, and painless. If you’re in New York, come to New Work City for a party Friday, October 14. If you can’t make it, you can register online!We are gathering all who can commit to becoming a donor for a party. Come in costume (it’s October!), fill out some paperwork, get a painless cheek swab, snap a pic in the photobooth, and party with us!   Because the mysteries of DNA matching encourage participants of subcontinental geographic ancestry, please bring as many of your South Asian friends as you can - though we hope all friends will join us and register!We will have spirits, music, and registration kits galore.  Forward widely (especially to people in NYC)! RSVP here soon! Also on Facebook! 2. After spreading the word, donations to support the test costs will be a big help. We are teaming up with SAMAR, awesome non-profit donor recruitment group, who will cover the $100 per person cost of lab tests and database maintenance.  If you’re willing to cover all or part of cost for yourself or others, the donation is encouraged and appreciated.  Most importantly, cost should not deter anyone from registering.    

Already registered?  Awesome!  Bring a minority to expand the breadth of the bone bank, and come party!

Can’t attend? We’ll miss you!  But you can still help.  Register to be a donor with SAMAR or Be the Match online.

-Deedee, Isuru, Jackie, Miro, Nick, Rachel and Tony

[amitguptaneedsyou]

Remember this, almost two years ago? Well, not only did Amit end up finding his match thanks to the friends who organized this event (and many others like it), but we got even more good news today: 

  Since 1992, SAMAR has been serving patients in need of marrow/stem cell transplants worldwide. We have proudly boasted for years that our volunteers are the greatest because of their commitment and compassion.

We wanted to thank you for your efforts throughout the years, especially in supporting our marrow registry drives. 

It is with great joy we would like to inform you that the drive you were part of was not just a recruitment effort, but produced the ultimate goal. 

On November 18, 2011 at the Brown Bones marrow registry drive, a donor registered, ultimately came up as a match and donated the cells to save the life of a patient!

  On behalf of our Founder & CEO, Rafiya Peerbhoy Khan and everyone at SAMAR, we wholeheartedly thank you! 

We hope you continue to support our mission so that together, we can find many more donors for searching patients. 

  Please pass along the information to any of your volunteers who were present at the drive.

[superamit]

I wrote this journal entry quite a while ago, but it’s taken me several weeks to decide to share it. Here goes…

“Fatigue”

Decadron, 1mg. Adderall XR, 30mg. Caffeine, 1-2 cups of coffee or bottles of Yerba Mate a day.

Go to bed tired.

Wake up in the middle of the night, tired.

Wake up in the morning, tired.

I’ve had the misfortune* of experiencing a number of mysterious ailments in the year and a half since my bone marrow transplant. Blood clots, nausea, crazy teeth sensitivity, incessant itching all over my body, muscle atrophy, easy bruising, arthritis, inability to eat or drink certain foods, more nausea, anemia. Broadly, many of these are due to a not-uncommon condition known as GvHD (Graft vs Host Disease) where my donor’s T-cells orchestrate an immune system attack on my body’s organs. Others are likely due to the battery of medications I’m on.

But the hardest thing to deal with? Fatigue.

And I feel wussy talking about it, because what’s the big deal about being tired?

Except when it lasts days, weeks, MONTHS.

When it makes it hard to motivate myself to do anything, when I can’t sleep, can’t function, and can’t ever not feel tired.

When some days I go into work in the morning and have to leave an hour later without a single thing done because I walked too much the day before.

When I spend every weekday morning at the gym to help regain muscle mass and regain stamina… And only barely notice a change.

When it’s Sunday night at 8, I’m already nodding off, and I doubt I’ll have the energy to be my best tomorrow.

When I feel like I’m letting down my friends because I’m too tired to hang out in the evenings. And letting down my coworkers because I can’t muster the energy and enthusiasm I owe them and owe my work. When I feel like a paler, weaker, imitation of my former self.

That’s when the fatigue feels like just about the worst part of all this.

I went to a Bone Marrow Transplant symposium a couple months back and learned that post-BMT fatigue can last 2-3 years, or forever. That the ‘new normal’ never really is. That people go back to work part-time in 12-18 months. Some never go back full-time.

I went back in 9 months. Full-time, and incredibly eager to go back to living a normal life. But my normal life is running me into the ground.

I feel like I shouldn’t be complaining… because I’m still alive, right? I’m still breathing. When they found this thing in me, I had a death sentence. A year later, I was filled with hope. Now?

But writing this feels therapeutic. And reminds me that it’s a long road.

I need to give myself time.

* It’s not all misfortune, mind you. The silver lining on GvHD is that some amount of it is correlated with a lower rate of Leukemia recurrence. That’s a good thing.

[amitguptaneedsyou]

An update on Amit. 

[amitguptaneedsyou]

A Willing Donor

Ekta Doshi is in her mid-thirties and has CLL. She's been searching for a matched donor for quite a while, she was diagnosed in 2011. Tragically, despite a recent 9/10 match, she will not be receiving a transplant. The matched person would not agree to donate, and now Ekta has to continue her search.  As Amit's friends and family who have been through this process first hand, this news breaks our hearts.  Please do everything you can to share the truth about what marrow donation is, so that no one who needs a transplant has live with the horrible knowledge that there is a known match for them who has chosen not to help save their life. 

Read more about Etka's story here. 

If you would be a willing donor, register. 

And please, share this story in the hopes we can keep it from repeating! 

[superamit]

I love getting emails like this and hearing from people who’ve gotten a chance to live because of your generosity.

There’s still plenty of people in need, and it’s easy to register.

[amitguptaneedsyou]

Please share with your friends and family, especially if they're South Asian! It's important to keep talking about what stem sell donation is.

It's unfortunately very common for someone to be contacted as a match for a patient in need and end up refusing to donate. 

You can follow Nalini's journey here. 

[superamit]

One year ago today my doctor called me in the afternoon.

I was in bed. He cleared his throat a couple times and then he told me the reason I’d been feeling weak, seeing weird blindingly bright spots in my vision, and had a fever that wouldn’t go away was because my blood was full of ineffective, malformed white blood cells.

I had AML leukemia. If I did nothing, I’d die in a few weeks.

A few hours later, I had a flight to the East Coast booked for early the next morning. I spent the night in a San Francisco hospital getting blood transfusions and antibiotics to allow me to fly.

I landed in NYC, my parents picked me up, and we drove to Yale’s Smilow Cancer Hospital. When they started pumping cell-killing poison into my bloodstream, the hospital became my home and my prison for the next few months.

I cried. I felt sorry for myself. I didn’t believe it was true.

Friends banded together and started drives across the country, then across the globe. I did interview after interview. Newspapers, TV, and radio helped spread the word. Facebook, twitter, and tumblr got people to drives. I couldn’t leave the hospital, and sometimes I was throwing up too much or too weak to talk. We kept going.

We organized online, and my prison became our stem cell drive campaign headquarters.

Friends donated time, money, connections. Strangers sent mail, hundreds of photos, and organized drives. Celebrities made videos. Tens of thousands registered to be stem cell donors. (Matches for others in need continue to come out of those drives.)

The nurses and doctors continued to pump poison into my blood, eliminating cancerous cells and healthy cells alike. They hoped to hold the leukemia at bay until a donor could be found.

A few months later, we found a donor! Friends and strangers had banded together to save my life.

I had my transplant in late January. And then began the year-long recovery process I’m currently in:

15-20 pills a day, on-and-off steroids to combat Graft vs Host Disease, nausea, weakness, muscle atrophy, scopes down my throat, probes up my nose until they hit my throat. Weekly, then bi-monthly blood tests, immunosuppressants - which keep my immune system from attacking my organs, but also make me susceptible to disease. Needles, needles, needles, so many needles, fevers, infections, severe mucositis, so much pain they gave me a button to press to give myself morphine whenever I wanted, anti-nausea drugs that resulted in weeks of lost memories, blood clots, followed by months of blood thinners, teeth issues, corneal damage, a slate of other issues a little too graphic to write about, crazy painful out-of-nowhere hand and leg cramps…

…all bumps along the road.

My counts are up. There’s no sign of recurrence yet. If I’m lucky, there never will be. I feel more normal with each passing week.

I was able to leave the hospital, and then able to leave my parents’ home.

I got to spend the summer in NYC, reconnecting with old friends, and returning to work at Photojojo part-time. I just saw my brother get married, saw a live volcano in Hawaii, saw the sun set above the clouds and the clearest night sky in the world. I visited Portland for the first time, and spent a week in SF working and seeing friends. Now we’re planning a road trip to move back West. We leave in a few weeks… on motorcycles.

A year ago I was on a plane from SF to CT because I was dying.

Today I’m on a plane from SF to CT, and I feel more alive than I have in a very long time.

Photo @ Twin Peaks last week in SF. (You can see photos of our adventures by following @superamit on Instagram!)

[superamit]

CBS Boston came by my hospital room yesterday to do an interview about my story so far + the urgent need for more donors to register. Here’s the video!

(It’s about 2 and a half minutes.)

[amitguptaneedsyou]

cheekswab.org

While Amit continues to recover from the bone marrow transplant process, it's important to remember that the need for minority donors still exists. The struggle to find a donor is not over for thousands of minority patients every year who find themselves in similar circumstances.  http://www.cheekswab.org/ is a new website that's launched in the last two weeks in hopes of putting together some information to better inform prospective donors about the need, process, and experience of both joining the registry and donating bone marrow. Please visit cheekswab.org to learn more, and remember to sign up for a donor kit if you haven't already! Spreading awareness is the first step to saving lives!

[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.

[amitguptaneedsyou]

The Takeaway, a co-production of WNYC Radio and Public Radio International, interviewed Amit this morning. Have a listen for an update about the donor search.

[amitguptaneedsyou]

What Happens Now?

There have been a lot of questions about what's going on with Amit now that our deadline has passed. (Nov 30th -- chosen based on Amit's doctor's optimal treatment schedule and the amount of time it takes the NMDP to process and make a swab available to search.)

In short, we wait.

In the meantime, Amit will receive chemotherapy while his doctors work to identify and confirm a potential donor. We hope he's able to have a transplant early next year.

Although samples collected from here on out will probably not be a part of his search, Amit and everyone else who has been working so hard on this project encourage you to continue to spread the word about the cause.

Please, tell your friends and family about the need for marrow donation. There are hundreds of patients waiting for a transplant.

Every person you add to the registry could be the match that saves a life. 

[amitguptaneedsyou]

Aziz Ansari and Chris Pratt Urge You to Give a Spit about Cancer

[amitguptaneedsyou]

Rinee Shah made this beautiful video. Please share it to help spread the word.

[amitguptaneedsyou]

We're in need of a few volunteers to help in NYC and elsewhere. Can you help?

In NYC, Samar is looking for a few volunteers for a few hours this Sunday to help assemble swab kits. Comment on this Facebook post for more info.

In Boston, Josh Gardner is looking volunteers to help at donor drives he's organizing, as well as people who have connections to local universities. Here's his post and he's asking that people email him at [email protected].

Jackie's still looking for volunteers to help contact Indian temples and cultural centers about hosting donor drives. You can be anywhere to help. She needs people to help email, design, and write. Contact her at [email protected].

Please reblog!

p.s. For the latest on how to help, and where donor drives are happening, etc. check out amitguptaneedsyou.com. (You can also stay up to date by liking the Facebook page or following this Tumblr)

[amitguptaneedsyou]

Thanks for visiting!

We're incredibly appreciative. This site is brand-new so we're still working out a few kinks and finishing up some pages.

A HUGE thanks to David Cole and Tag Savage for pulling an all-nighter to design it!