Help Vinay & Sameer

Dear Team Sameer,

In recent weeks, we have learned of two more Indian-Americans in our social circle who need transplants. We must mobilize and push forward with more drives so that these folks can find bone marrow matches. Here is a posting about one of them.

Please do what you can to spread the word and, more importantly, organize drives yourselves (see this page for instructions on how to do so). Email us from the Contact page if you have any other thoughts on how to push the cause forward or need assistance organizing a drive. With 25,000 more registrants, we should be able to find 3-4 more people matches immediately!

Thank you for all that you’ve already done. Let’s push forward so we can still hit our goal and save more lives.

Sameer

With God’s grace, things continue to go well. I am very fortunate that the only significant thing my body has been bugging me with is mucusitis, where thick, ropy mucus forms in my mouth and results in me having to spit all day and night. This is caused by the radiation and chemo and had disrupted my sleep for several nights. I would wake up every 15-30 minutes feeling like I had to spit. Last night, the nurses introduced me to The Cocktail - a mix of Benadryl and Atavan that knocked me out good. Benadryl also dries out mucus, and Atavan is a muscle relaxant. The combination of these two made it so that I slept without spitting for 2-hour stretches, which was fantastic! (The initial high from The Cocktail was something else too - Reena watched in amusement as I fought through it to finish a proposal I was working on for a customer )

The mucusitis also makes it so that I’m not able to really eat anything. My weight started dropping (6 lbs in one day!), so the docs put me on IV food (1100 calories, 75g of protein, some carbs, plus a bag of lipids), and now I’m back above my admit weight. My stomach is still hungry, though (the IV food goes straight into my bloodstream), but the inside of my mouth is not in good shape, so I only manage the occasional fruit or soup to avoid my stomach from completely shrinking.

I’ve been having trouble getting out of bed in the morning, partially because my sleep is interrupted so frequently by bathroom breaks or nurses, and partially just because my body needs rest. So I’ve been waking up past noon every day, struggling to fight off some weakness, eventually showering, and then walking 0.5-1 mile around the floor to prevent deconditioning. Thereafter, I am able to sit down and work for a few hours until about 11pm or midnight, when Reena and I go to sleep.

Overall, the nurses are amazed at how well I’m doing. Many of them comment that I look too healthy to be in a hospital; others simply scatter when I plow down the halls at top speed for my daily “walk”. However, the toughest days are supposedly still ahead, so we’re bracing for more pain until engraftment.
Engraftment should happen on day 12 or later, after which graft-versus-host disease symptoms are likely to set in. Keep in mind that some GVHD is a good thing, because it also means that there is a graft-versus-leukemia (GVL) effect. GVHD can affect one’s skin, GI tract, or liver (less commonly). I haven’t had diarrhea or nausea yet but fully expect to in the coming days.

Once my counts are rising from my new immune system (THANK YOU, MY DONOR!!!!) and I can eat by mouth again, I will be released on all counts. Hopefully that will be just in time for my real birthday (10/22)!

Thanks and love to you all for your undying support,

Sameer

Ok, let’s try this life thing one more time. My body didn’t quite get it right the first time, so we’re giving it another shot!

My new bag-o-cells finally cleared baggage claim, customs, passed by duty free without spending too much money, cleared the laboratory, and arrived tired but looking fresh at 2am last night. Patti, an 18-year veteran Hutch nurse, checked the precious bag, hung it (without tearing it!), and then let the new stem cells slide right into me through my Hickman line. It was simply magical.

Enough words. Here are the pictures and videos (1 , 2, 3, 4) to tell the rest of the story.

With lots of love to you all,

Sameer II

It’s Day 0….and 30 minutes from my new life! My donor’s stem cells by now should have arrived at the airport and been transported to the SCCA lab, where they are being processed. In 30 minutes, they will be delivered (apparently warm) to my hospital room and hung to drip into me for about half an hour.

And then my new life will begin!

I’m feeling pretty good. I woke up with a bum shoulder which bugged me today; I think my joint might be swollen for some reason, but I’ve been feeling great otherwise! Anyway, I’m now sitting here with Reena, my family and our family friend, Eli Livne. Swami Bhaskarananda and friends from the Vedanta Center stopped by earlier. We’re talking about computing, engineering, stocks, and usual Bhatia family stuff. I’ve been doing a little work (signing an offer letter for another senior hire in India!) and making sure I keep all of you apprised. All of us are just biding the time till our imminent half hour dance party!

To my donor: THANK YOU for everything you’ve done. You’re an amazing person for giving another, unknown human a new life. I can’t thank you enough and look forward to meeting you soon.

To my loving friends, some of whom I have never met: you have all made this miracle possible through your tireless efforts, drives, and undying love and support. I can’t thank you enough, but will certainly try!

It’s Day -1…one more day till I’m born! Things have been going exceptionally well. As part of the preparatory regimen, I’ve been through two days of chemo and three days of total body irradiation (TBI). And, with God’s grace, there have been almost no negative effects!

I consider myself extremely lucky. I’ve had near normal energy levels and no pain or discomfort. There haven’t been any significant GI issues yet (no diarrhea either!), although drier foods taste really chalky in my mouth. But that’s hardly anything to complain about considering what my body’s been through! I’m not out of the woods yet. Days +4 through 10 will likely be rougher since that’s when my old immune system will have completely died and the new one will still be engrafting.

I found out today that my cells are slated to arrive on a 9.30pm flight at Sea-Tac Airport tomorrow. (Why they’re arriving so late is puzzling since they are being harvested today and coming overnight.) They will then go to the SCCA for processing and arrive at the UW for infusion around midnight. I’m hoping they arrive before midnight so that I can share my new birthday with Gandhiji’s (Oct 2nd)!

Until then, we are enjoying the hospital food, trying to return phone calls from friends, and continuing to get some work done. Oh, and in case you were wondering, the reason cancer patients are bald is to maximize their Kissable Surface Area (KSA)! Isn’t that obvious??

So this is how they count in the transplant world. It’s “Day -6″ for me today. In six days, I will be born again, not in the evangelical sense, but by literally having a new protective shield - a new immune system - growing inside me. All of this, of course, is THANKS TO MY INCREDIBLE DONOR. Wherever you are, may God bless you….you have no idea what you are making possible here. If I have my way, there will be a great multiplier effect that will “return the favor” that you and humanity have given me many-fold over the years.

It’s been good to be in the hospital today. I’ve tremendously enjoyed the time with Reena, my loving and beautiful wife, over the past few days. She’s a rock of support and the most tender person ever - all rolled up into one delightful creature. How God could make me such a lucky man is beyond me.

I’ve also had a fantastic time with my visitors over the past week: my freshmen roommate and dear friend, Carter Lipton, my brother-in-law, Deepesh, and my very loving mother-in-law. And then, yesterday, Lakshmi Pratury, an old friend who I worked with in the early days of the American India Foundation, swept by yesterday afternoon to catch up on old times - and, unexpectedly, also to invite us to a private pre-screening party for a new film she’s working on, Outsourced. The evening at the Skinner’s house in Seattle, one of the truly historic Seattle families, was warm, charming, and a fantastic prelude to a month in the hospital.

So here I am, rearing to go. (My spirit is being dampened by the realization that a patient a few doors down may have just died…but I don’t know that for sure. I’m now struggling to decide whether to stay close to the action or request a room transfer so that I’m further from the ICU rooms for the next few weeks.) Overall, my medical team has wisely wished that this be the most boring and uneventful hospital stay I could ever imagine. And I certainly hope it is.

I was amazed today by a truly remarkable soul who is simply undaunted in the face of certain death from cancer in the next few months. I already witnessed my father-in-law’s valiant battle in the face of the same predicament over the past 3 years, and was amazed at his strength and smiles through it all. And today I was introduced to this article and this video of Dr. Randy Pausch, a Carnegie Mellon professor with months to live. I realized that these two men have one important thing in common - they lived their lives fully for every moment. If I don’t learn a single thing through this journey, I hope to at least remember that lesson since, as Dr. Pausch points out, life is finite, one just never knows for exactly how long.

Today, Day -6 for me, is also Day 12,775 for one of my closest friends, Dayal. As he is paraded around San Francisco wearing a wig and cheap women’s perfume (don’t ask!), I must say, that’s the only place I’d seriously consider ditching my loyal IV pole for right now. Happy Birthday, Uncle D!

When my best friend, Robert, first approached me with the idea of ‘going public’ to mobilize South Asians from around the country to register as bone marrow donors, I was quite hesitant, particularly as an entrepreneur running a business at a crucial inflection point. But Robert persisted and put my worries to rest, more or less saying, “Just let us use your name and we’ll take care of the rest.”

Whenever I’ve allowed my crazy friend - also my first business partner - to act on his incredible instincts, something fantastic has happened. But this time, the results have been outside the realm of all reasonable possibilities or expectations.

Ladies and gentlemen, I was informed today that, through a miracle of God, a 10 out of 10 match has been found for me!!

Let that sink in for a second…this is truly a miracle that came through literally at the last minute. If this match had been found even next week, it’s not clear that it would have been in time given that I need some sort of transplant within 4 weeks. This is a case of God simply picking up a boon and dropping it in our laps…how else can one explain such unbelievable fortune??

This match appears to have come from the 400+ bone marrow registration drives that Teams Vinay and Sameer have put forth, registering nearly 24,000 donors to-date. Priti Radhakrishnan has been the national coordinator and driving force behind the Team Vinay drives, which kicked off several weeks before ours, and Robert mobilized many of my friends to join them and begin organizing drives nationally. Literally hundreds and hundreds of volunteers have been working tirelessly during the past two months to register tens of thousands of South Asians. The result? An increase of South Asian representation in the national bone marrow registry by 20%.

Knowing that our friends and volunteers have leveraged my situation to do something so valuable for the next batch of patients has been very satisfying for me. Recently I was also informed that two other patients have found matches through our drives, which has been even more thrilling. But, as I’ve stated publicly many times, me finding a match through this process was going to be close to impossible.

First, let’s look at the numbers: 1 out of 20,000 South Asians finds a match. If those odds weren’t tough enough, my search team at the Hutch found that I have an unusual gene on my father’s side of the family, which would prove to be extremely difficult to match. (In fact, we went the extra mile to type all of my cousins on that side of the family, and the closest we got was a 2/6 match.) To boot, it would take 4-6 weeks for any new registrant from a drive to show up in the national database, and I would need many more than 20,000 new registrants to have a statistical chance at a match. Bottom line: finding a match through this process in the time required would be nearly impossible.

Yet many hundreds of hands and hearts around the nation united behind this cause. You volunteers who have been tirelessly giving up your weekends and evenings to conduct drives have delivered a miracle from God to me – not only a match but a 10 out of 10 match, Pure perfection in the face of impossibility. You all have given me a new lease on life and for that I don’t have adequate words to thank you…

What I will say, though, is that our work is only half finished. We had set out a national goal of registering 50,000 donors, and we’re halfway there now. There are at least 3 other South Asian patients at this very moment who still do not have matches. They are surely as anxious as our friends and family have been, so we cannot rest till our work is complete.

Please keep pushing on all fronts and encouraging people to register. Please continue organizing drives – especially corporate drives and college campus drives. (I know there are a number of upcoming drives being scheduled around the country, and we will update the website soon to reflect these.)

As for me, I’m extremely grateful to have someone who appears to be a very dedicated donor. I don’t know anything about him but that he responded immediately when called upon. I am sure that he is committed and want to say THANK YOU to him for the new life that he is about to give me. I am simply overwhelmed by the day’s turn of events and thank you all for the prayers and wonderful kindness that have sustained me to this point in my journey.

With love and thanks to all of you,

Sameer

“IN LIFE, IT’S NOT ABOUT HOW HARD YOU CAN HIT. IT’S ABOUT HOW HARD YOU CAN GET HIT AND KEEP MOVING FORWARD.”

- Rocky Balboa, to his son in Rocky Balboa

- My father to me, through his actions and teachings

The same day we found out that those blasted blasts were back, we also learned something quite encouraging: A potential donor just entered the registry and looks like a possible match for me!

For full effect, I have to share the context in which I learned about this development. My search coordinator at the Hutch called me very guarded and suspicious and said, “Someone possibly matching you on at least 9 of 10 antigens just appeared in the registry yesterday. Do you want to tell me what’s going on here?”

She suspected that I must have had something to do with this last-minute development! Was this one of the family members typed through our efforts on my father’s side of the family (from where I have inherited an unusual allele which has proved almost impossible to match)? But after I’d answered a bunch of questions - to prevent donor coercion she isn’t allowed to share any information - she concluded that this was truly an anonymous donor who might be my unlikely match!

So what does this all mean? For starters, it means that all of you CRAZY people out there who probably did have have something to do with this are to blame! You’ve been pushing hard to register donors may have found me a match! You guys are all nuts, and I have to thank Robert, who convinced me to go public with my case to drive registrations; Priti and all of Team Vinay for their groundbreaking efforts; and Melindah and all of the countless volunteers in Seattle, New Jersey, California, and all over the country who have been organizing drives and building awareness for this cause. There are literally hundreds of you, some who don’t even know me or Vinay, but we know who you are. As Reena loves to say, you guys ROCK! Two new desi patients have already found matches from your efforts in registering 23,000 South Asians. Can you imagine how many more lives could be saved if we could get 50,000 donors registered?!

But let me catch my breath. This potential match is not yet confirmed; more typing and information is needed still. And, as per my earlier post, our community has a horrible track record in stepping up when called upon to donate stem cells. Even though it’s almost as easy as a blood draw, only 30-40% of us are willing to do that to save a life. I am hoping that this is changing with our generation and our campaign.

Even if this match doesn’t come through, I am blessed to live in a time where a new source of stem cells has become available: umbilical cord blood stem cells. For those of you mothers out there - do you remember how you were given an opportunity to bank your cord blood for a fee? Well, I hate to say that most of you were probably not even told that you could have donated that cord blood to potentially save a life! It’s another one of the tragedies we’re uncovering as we go through this process - new mothers are not told that their cord blood could be just as valuable to a patient in need as bone marrow from a donor.

That cord blood contains very naive stem cells, albeit not very many of them. Since they are naive, they are much easier to match (and you don’t have to deal with a donor who may or may not step up when called upon). One cord unit is not useful for adult recipients given the low volume of stem cells, but researchers have begun refining techniques taking two different cord blood units and transplanting them simultaneously. The result with two cords? Basically the same as a bone marrow stem cell transplant! Engraftment, chimerism, and long-term cure in the majority of cases!

Amazingly, this option was not available anywhere for adults until about 5 years ago; even then, the results were very uncertain. The Hutch has been conducting dual-cord blood transplants for only 1 1/2 years now (isn’t that amazing - 18 months ago, I potentially would have had zero options….let that sink in for a minute). Although the data are still limited, science seems to suggest that cord blood stem cell transplants may be the transplant norm of the future. So tell all expecting mothers - especially ethnic minorities - to insist on donating their cord blood if they don’t want to bank it for themselves! The docs may not tell you about this option, but it doesn’t cost you anything to do and you just might be saving a life.

And to my bone marrow match, if you’re out there, I hope you are free from negative family pressures and that you also joined the registry voluntarily and with the intention of being a hero. This might be the chance both you and I have been waiting for!

Yesterday I unexpectedly ended up back in the hospital and started a new round of chemotherapy. My pre-transplant workup earlier in the week included a routine bone marrow biopsy, which showed that there are again blast cells in my marrow. These are those arrested myloblasts that define Acute Mylogenous Leukemia (AML).

So we once again go down a path to beat this nagging leukemia into remission - literally!

One more week in the hospital is not a big deal. In fact, I get to catch up on my several thousand-email backlog, not to mention all the work that I’ve been meaning to get to! I don’t have to drive anywhere or do anything even remotely unproductive. I actually wonder at times if the push-button food procurement system and short bed-to-bathroom distances in the hospital aren’t great for any entrepreneur trying to focus (yes, we all know how hard that is!). Anyway, I digress. Someone remind me that I’m supposed to be sick!

My point was that the short time in the hospital is not that bad. As long as I come out healthier than I went in. The more times this leukemia shows an ability to come back, the more difficult time they say my body will have fighting it off, even after transplant. Anyone who knows me knows that I don’t really care about the science or the odds. We all know what the score will be at the end of this match!

Overconfident? Maybe a little. But my appointment with the head of the Hutch, Dr. Applebaum, made it clear to me that this is the time in my life to muster supreme confidence (and, of course, faith in the even more supreme God in whose hands my fate rests). He cited a study done by a very scientific and data-driven doctor at the Hutch that showed a very strong scientific correlation between long-term survival and one important attitude parameter: optimism. Those patients who are more optimistic - who believe that everything will, in fact, work out - actually cause themselves to survive at a higher rate than pessimists (or maybe even realists!). Or, put another way, this is the time in my life I should be thankful for being an entrepreneur rather than a venture capitalist!

The past few weeks have been spent continuing to enjoy the beauty of my family home on Mercer Island (near Seattle). The weather has been fantastic and the time with my parents and brother even more precious. (As my friend, Veer, points out to me: how often is it that, in your 30s, you get to spend an entire summer with your parents?!)

Reena has been doing the global gallop for the both of us - attending to her dad in NJ and running off to India to take care of our business operations there. (As a side note: you know how we’d been eagerly looking for someone to run our India ops? Well, we finally scored our dream candidate and he starts in a week! This takes a lot of pressure off of Reena and me and allows us to spend time in the US/EU markets growing the business.)

We’ve both had to be strong in this time apart - nearly a month - but we know that we’re doing the right thing given everything we’re juggling. Many people turn off the rest of their lives to deal with disease; we chose to continue being ourselves - let the disease try to keep up with us!! It’s been really helpful that I’ve been quite asymptomatic during this time. Sure, I’ve been getting tired from time to time. But it’s nothing that a quick nap can’t cure! My days have been absolutely packed with daily visits to the SCCA clinic and bi-weekly blood and platelet transfusions. On top of that, I have been working full-time to close a couple of monumental deals for our business (one down, one to go!). So by the time I’ve resigned myself to taking a nap, I’ve normally moved onto something more invigorating and motivating!

During my time at the clinic (5-6 hours per day), I’ve been interacting with a lot of doctors and nurses. Some of them say to me, “Hey, didn’t I see you on the news?”. Others are amazed when I tell them that my and Vinay’s crazy friends have registered over 23,000 people in a short two months.

However, I’ve noticed that I always have to follow this good news with bad: South Asians who have actually taken the trouble to register as donors only step up 30-40% of the time when called upon as a match.

Man, how very pathetic and shameful….I hope we can all reflect on that number for a second and realize how despicable it is. I literally have to mumble under my breath when mentioning our community’s failure in this area to my medical team. I simply find myself at a loss to explain this phenomenon to all the people who are otherwise so impressed at everything we have accomplished as a community. (Does this mean that our efforts have only registered 7-8,000 real donors since the other 15-16,000 will turn down the opportunity to save a life by refusing to essentially sit through a blood draw, something I do every other day?) I have to explain that a lot of Indian families will look at their kids/brothers/sisters and say, “Beta, why are you creating such a hassle and taking such a risk for someone we don’t even know?”

Our enemy here is part fear, part ignorance, and partly this remnant survivalist desi instinct where us Indians will only help our own flesh and blood. (It’s interesting that in this particular instance, someone is telling you that you ARE connected through flesh and blood - you are a DNA match for someone’s blood system! But let me not dwell on the irony of that.)

As for the other barriers to donor retention, we’ve hopefully made some progress in educating people through this campaign and are rapidly moving toward eradicating ignorance and its concomitant fear.

Whenever you or anyone you know is called upon as a donor and feels this fear, know that you’re not alone and that this feeling is not unnatural. We all have fears - for many of us the sight of needles, blood, or even the hospital causes an uncomfortable feeling in the pits of our stomachs. But when faced with that fear, know that your brother’s or sister’s life sits in the balance with your decision as to whether you can spare a few hours for what feels almost like a blood donation.

Can you even imagine the fear that most cancer patients must experience? You begin to realize the meaning of living life one day at a time. You understand that nothing is certain, not even the sun coming up tomorrow. You realize (if you are spiritual) that God is the only constant, the only certainty. If you can successfully come to all of these realizations, you can maybe eliminate most of your fears as a cancer patient.

As a donor, hopefully the path to being free of fear is a simpler one. Please think about this, discuss it with South Asians you know, and spread the word that life’s too short to live in fear - especially when you could instead live as a hero who saved a life! Tell them that I’m the patient and I’m not afraid - are you?

Hi Everyone,

I wanted to update everyone on how Sameer is doing. Since he finished his first round of consolidation chemo a few weeks ago, he’s been settling into a routine in his Mercer Island family home. He’s under his mom and dad’s tender, loving care! He goes back and forth to the clinic almost every other day. When I’m not physically with him (because I’m always emotionally with him!!!), he goes alone to get his blood draws. More often than not, he needs some type of blood product, either blood transfusions or platelet transfusions. They tell us that his “machinery” isn’t functioning properly anymore. This will all be fixed once he undergoes his transplant.

When a “normal” person has low hemoglobin levels (red blood cells that carry oxygen), one can feel tired and low energy - not our Sameer. He barrels through his day, going to appointments, managing his care, catching up on emails, making sales calls, etc. as if he’s perfectly healthy! He overcomes all of the physical effects of his illness with a strong drive to live as normally as possible. We love that about him, although it makes us worry and watch him carefully, but we realize this drive is what makes him special!

Overall, he’s our energetic and independent Sameer! It has been frustrating and worrisome to learn almost every other day that he needs more blood products, but that is par for the course. We’re glad that he’s been feeling well otherwise - much of it due to the blood products!

All of you are in our thoughts daily as we hear about the momentum around increasing donor registrations.

Love!

Reena