Help Vinay & Sameer

I once heard Swami Bhaskarananda from the Ramakrishna Mission say that one of our primary goals in life should be to expand our circle of selfishness. As babies, we are all extremely selfish and focused on our own needs. A bit older, we expand our concept of what’s “mine” to include our immediate families. We start being protectively self-interested in our families - if any member of our family is in harm’s way, we get upset. And as we mature even further, some of us expand our concepts of “me” and “mine” to include community or country and perform great deeds as community activists or patriots.

We must recognize that as humans, it is our nature to be selfish. The question is, how wide do we make our circle of selfishness? Most people - especially in the Indo-American community - would accept that this circle should include our immediate families, extended families, and even our linguistic or religious communities. But we often have trouble expanding our circle beyond those boundaries. This perhaps explains why our community typically is good at engaging in business but bad at engaging in politics.

Almost all of you reading this blog have already taken active steps to reach beyond these boundaries, whether you realize it or not. By registering to be a bone marrow donor, you are stepping forward to be of help to anyone who needs a transplant. That anyone could be someone like Vinay or me, or it could be patients like Bevin, Savitha, or Dhiren who are still praying with all their might that their match might step forward and register to be found.

My plea to all of you is to continue spreading the word and coaxing and cajoling everyone you know to get registered. Here are some ways you can spread the word using a video from Russell Peters or another one from Rasika Mathur:

• blog about the video
• make your email footer link to it
• update your IM “status” messages about it
• get it to be one of the most watched videos on YouTube…everyone should watch it, comment on it, rate it
• upload it to Facebook (you should also upload it to the help vinay group on facebook)
• email your friends!
• “post” the link to the video on Facebook
• bulletin your friends on other social networks
• embed the video in your myspace profiles/their blogs/etc.

Thank you all for getting our campaign this far. Now let’s expand our circle even further for our brothers and sisters who need us at this critical moment.

The poet W.H. Auden nicely captured the spirit of Thanksgiving when he wrote that, in prayer, it’s best to quickly get past the begging and on with the gratitude part. He also wrote, “let all your thinks be thanks.”

This Thanksgiving, I can do nothing but this. It’s feels odd to think that it was only a few months ago, in May, that doctors told me I was gravely ill. One doctor even told me, “I won’t have you dying on my watch!”, prompting me to wonder what he was really saying since he would be rotating off my team in ten days.

But months have now passed and I’m still here. Not only am I here, but feeling as healthy as a horse. (Well, almost. My first leg workout this year last Saturday almost knocked me totally out of commission all week! It also landed me in trouble with my family and doctors since, combined with some dehydration and fatigue on Sunday, it led to shivers, chills, and a temporary fever.) Most importantly, I’m on the road to a full cure, something that will be marked by 3 years (2 years, 10 months to go!) of no relapse.

My thanks this year is for all of this amazing fortune, and for the miracle of a last-minute bone marrow match. But, more than anything, for what has made it all possible: God, my incredible wife, my loving family, and, of course, all of YOU who saved my life.

I realize that I have not written to you for almost a month now and felt that it is time for another update.

We have been watching Sameer improving and recovering gradually. His blood counts are now close to normal. He is taking quite a few medicines some of which affect magnesium, liver enzyme and some other levels. He is getting magnesium as intravenously through the Hickman line which is still installed in his body. His medical team is adjusting medication and dosage to manage all the pertinent blood levels. He is being monitored closely and gets a complete blood work done twice a week. As he mentioned in his blog on www.helpsameer.org his medical team does not find him too interesting and we pray that it stays that way!

He is starting to show a little chin stubble and also a moustache. He is likely to have a goatee pretty soon unless he shaves it off as this baby is growing up really fast! He has had a deep tan from the chemotherapy and radiation treatments. I am noticing that the tan is getting somewhat lighter and his skin is showing signs of returning to its normal color. I remember reading somewhere or hearing in one of Swami Bhaskaranandji’s lectures that all the cells in the body (except in the brain) get replaced every 3-4 months. This correlates with the close monitoring for 100 days from the transplant by the transplant team. After that the monitoring is handed off to a hematologist/oncologist.

We were concerned about the Graft Versus Host Disease (GVHD). There might have been some small signs of it but with God’s grace and the good medical team, we have not seen any major issues related to it. We have to keep a watch for it since GVHD can strike even after a year or more of the transplant. Sameer has to be close to a transplant center for a year or so because if there are any symptoms of GVHD, they need immediate attention.

We keep doing our best as we move through different phases of Sameer’s recovery. We keep praying for an uncomplicated recovery and so far God has been answering our prayers. We hope that the rest of his recovery will remain uncomplicated as well and he will be back to his normal or even better than his normal.

Sameer and Reena are planning to move back to San Francisco sometime in January. It has been very nice to have both of them in Seattle. Reena is growing fond of Seattle with special fondness for views of the mountains and particularly Mount Rainier http://search.live.com/images/results.aspx?q=mount+rainier&mkt=en-us. It is not hard to see why so many people fall under the spell of what is locally known as the Rainier effect! I am sure that they will be back here in Seattle many more times but under better circumstances.

With Best Wishes for a Happy Thanksgiving and Everything Else,

Kumar Bhatia

Dear Friends and Loved Ones,

I can’t stress to you how much I marvel at my blessed fortune every day, a fortune that all of you had a hand in creating.

If you look back at my earliest posts on this website, you’ll recall a newly-diagnosed leukemia patient needing a transplant from a grossly underrepresented and traditionally apathetic community. Along with Vinay, I challenged you all to step up and spread the word; to register and respond when called upon to save a life. I knew that this process was very unlikely to benefit me directly, but I had faith - and was convinced by Robert and others - that I had an opportunity to bring visibility to this issue to benefit future patients. This worked as hoped, and two other patients found matches through our drives. And the unimaginable happened: I also found a match through your efforts!

So who is to credit for this? Each and every one of you. It could have been your email that caused the donor to register. All of you stopped to think for a minute, “What if this was me or someone in my family?” and then did something as simple as sending an email to everyone you knew. This was Awareness Building, and was a crucial phase of your efforts. Others of you - many of whom I don’t even know but hope to seek out to thank in person one day - vested yourselves even deeper by organizing drives. You did this at your companies, your colleges, in your local communities, and at your temples of worship. And one of you actually won the luck of the draw and got to be my donor.

In all of this, I consider each and every one of you heroes. You each played a part in literally saving my life. Just think of it: if you hadn’t put in the effort you did - whether it was sending an email or organizing a drive - I would not be alive today. I would not get to be a goofball for Reena and get her to giggle like a little girl, something that brings me great joy every day. I would not get to hug my dad or cherish discussions with him about life, philosophy, and spirituality. I would not get to continue to build our startup (www.octanetech.com), playing XBox with Prashant, or making big career plans to make a bigger difference when I grow up.

Thanks to you all, however, I am not only alive but well. I am feeling 90% normal (my mind masks almost any gaps in energy, so this is my best estimate), and my medical team is quite bored with me. My first week out of the hospital, they saw me once and then called before my second scheduled appointment. “You know, you’re really not that interesting to meet with twice a week. Do you mind if we just, you know…skip the second appointment each week?” they asked. No problems here; this way I get to focus and work more! At my single weekly meeting the following week, they informed me that I am doing better than 99.9% of patients at this stage. I was blown away and immediately stopped peppering them with questions about when I would be back to full energy and get some hair on my chin. And this week, the doctor didn’t even set foot in the exam room. Oh, and I now have some hair on my chin.

All of this fortune has been divinely initiated and humanely implemented. And I can’t get over how un-difficult it was for all of us to band together, and save 3 lives, mine included, in a 3-month sustained campaign. We now are aware of 4 more individuals who desperately need donors, and I strongly urge all of you to think about the simple actions you each took to save my life. Let’s see if we all can come together one more time to create a blessed fortune for someone else.

From Kumar, Sameer’s father,

Sameer has had a challenging time for the last couple of weeks. This was expected and fortunately his side effects while quite uncomfortable were less severe than the average. The chemotherapy and the radiation had caused his mouth to become sore and the immuno-suppressants had caused his throat to get constricted. As a result, he suffered from mucositis (http://www.cancersupportivecare.com/mucositis.html)  where the mouth produces large quantities of mucous causing him to cough and  spit frequently into a paper cup. The cup was getting full in 2- hours and the nights were particularly difficult since the mucus interfered with his sleep. The throat constriction made swallowing difficult and he had to be fed liquids via the IV hooked up to his Hickman line. Talking caused discomfort and pain. His right shoulder was quite painful and the left shoulder was slightly painful. It was difficult to see him suffer like this even though we knew that it was fortunate that he did not have any fever or diarrhea which are not uncommon in his situation. It seemed to me that all the prayers, blessings and love form everyone were allowing him to ride the ship of prayers and blessings through turbulent waters which otherwise he would have had to swim through on his own.

Kumar Bhatia

It’s Day +16, and all’s well….I’ve actually started engrafting!! My neutrophil count (the part of my white blood cells that fight infection) had literally gone down to 0.00 a few days ago, but then began to rebound over the past 3 days. First it went to 10, then 30, then 50, then 280. In the meantime, my overall white blood cell count climbed all the way to 1000.

The preceding days (between 8 and 16) were all pretty much as I described in my earlier post. Fortunately, I didn’t develop any major mouth sores and I was able to sleep with my newfound nightly “cocktail”. Miraculously, I haven’t had any diarrhea or nausea either. Yes, I am very lucky! Some of you must be saying some special anti-diarrhea mantras for me or something, because that’s just something you get with chemo.

I told the doctors 3 days ago that my goal was to be home by my birthday. They asked, “Have any plans?”, to which I said no, and they retorted, “Better start making some!”. By Wednesday, they told me that they were targeting Friday (today) as my discharge date! I was amazed and surprised - and incredibly excited to get to go home. I haven’t actually minded the time in the hospital much; I’ve been terribly busy and behind with work (lots of good stuff going on with the company!). But you do feel cooped up after a while here.

(In classic Sambastyle, I did negotiate for the hospital to lift up the permanent Venetian blinds that are wedged between the double windows in our room so that we could fully enjoy the beautiful view of the Montlake Cut and Lake Union. It took me 2 weeks to accomplish this, but the best part was that every nurse who has walked into my room since has asked me how the heck I managed to get those blinds up. “I just always tell my patients it’s impossible!” they say. Small victory but big joy )

As far as getting home, I was most excited by the idea that my neutrophils would go up, my mouth would heal, and I would be able to start eating again! Reena and I got excited and began trying to figure out how to pack all our stuff, and started making plans for the weekend.

This morning, I noticed that my throat had pretty much completely healed. However, my mouth still felt a little cut up, not healed completely as I was hoping. The doctors came in and told me my neutrophil count had actually dropped from 280 to 80. They said this was not cause for alarm; it’s possible the neutrophils being produced were being deployed to heal various parts of the body.

Now their prediction is that I should be out in 2-3 days. Let’s hope it’s less than 2! In the meantime, no issues. We’ve got plenty to do - I still haven’t read any of the magazines or books I’ve been getting since May!

See video of Sameer receiving his transplant. A happy day.

Read the rest of this entry »

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??

Our friend, Sameer Bhatia, was just diagnosed with Acute Myelogenous Leukemia (AML), which is a cancer of the blood. He is in urgent need of a bone marrow transplant. Sameer is a Silicon Valley entrepreneur, is 31 years old and
just got married in 2006. His diagnosis was confirmed just weeks ago and caught us all by surprise.

Another friend of ours, Vinay, was also diagnosed with AML and also requires a transplant (many of you may already be familiar with Vinay's campaign). We have teamed up with Team Vinay in order to build greater awareness of how you can help.

3 Things You Can Do!

The greatest likelihood for a bone marrow match for both Sameer and Vinay is from someone in the South Asian community - however, very few South Asians are actually in the bone marrow registry. This is where we need your help.

1. Please get registered
Getting registered is very quick and requires a simple cheek swab. Team Vinay has organized a nationwide campaign and we need you to get registered by visiting a local drive. Drives are currently taking place all around the country, including throughout California, Washington, Michigan, Illinois, New York and many other states. Please see the full list of locations here: http://www.helpvinay.org/dp/index.php?q=event.

2. Spread the word
Please share this web page with at least 10 people (particularly South Asians), and ask them to do the exact same. Please point your friends to the local drives and ask them to get registered.

3. Visit Vinay's site
To learn more, please visit www.helpvinay.org. The site includes more details on how to organize your own drive, valuable information about AML, plus FAQs on registering. Please visit http://www.helpvinay.org/dp/index.php?q=node/108 for more information on the cities where more help is needed. Thank you for getting registered to help Sameer and Vinay fight and win against leukemia.

Thank you, Friends of Sameer and Vinay