Help Vinay & Sameer

By: Reena Bhatia

Do you know what it feels like to be carried through the crowd at a huge gathering on top of peoples’ hands? Where you have to trust the hearts of the people below you to keep you going. Well, I didn’t know how that felt before Sameer was diagnosed with AML, now I do. It’s all those hands that are taking us to our goal of 50,000 new registrations. Both Sameer and Vinay are being carried by those hands, and Rashmi and I along with them.

We have been tremendously moved by the stories of people wanting to do drives, people that do not personally know any of us, people that love us - all putting valuable efforts into what is most necessary for us right now. You are all changing the face of this need. Hopefully all of the efforts these past few months and the awareness that you’ve helped bring to the issue will make it unnecessary for anyone who is diagnosed with a blood cancer to have to wonder if they’ll find a match in time.

All those hands are making a huge difference in how we solve this problem for future patients. There aren’t enough words in Webster’s to describe how much gratitude and how humbled our families, Sameer and I feel when we think of all of your contributions.

Let me give it a try with a simple, “You Rock!!!”

It’s been 3 weeks since “Team Sameer” officially kicked off its efforts and partnered with Team Vinay. Our mission is ambitious but simple: partner to get 50,000 South Asians registered in the bone marrow registry so that future patients do not have to worry about finding a match.

This mission is built on the backs of more ambitious missions before us - specifically that of the MatchPia team (www.matchpia.org), which registered over 31,000 South Asians at a time when there were only 19,000 or so in the registry. Starting nearly 2 months ago, Team Vinay has been responsible for the vast majority of the 18,000 registrations to-date and is led by a very passionate attorney, Priti Radhakrishnan, who has been working full-time to create the national movement that this campaign is today.

I want to take this opportunity to thank my dear friend, business partner, and close advisor, Robert Chatwani, for inspiring me to go public with my story. I didn’t realize what a difference it would make…but I guess that’s why I keep him around :). Like a true entrepreneur, he has assembled a team of the most enterprising, organized, and driven people we know, and I want to take a minute to give credit where it’s due.

Melindah Sharma, Sundeep Ahuja, Monica Badlani, and Meeta “Maxim” Gaitonde are leading communications efforts and coordinating activities between all of the bone marrow drives around the country. Nick “Prince” Myers is responsible for posting inappropriate pictures of me on the helpsameer site (which I am explicitly denied input on!), and Bhavna “Beepers” Patel, another great designer, is certainly egging him on in this effort. “Slim” Brady Kroupa is coordinating corporate drives, while “Uncle D” (I forgot his real name) is explicitly responsible for leaving me hilarious voice mails so that I get my laugh of the day.

I must share the contents of one of these voicemails as it honors the people that Team Vinay and Sameer have successfully brought out to register. At a drive in Mountain View, CA, a kind-hearted uncle who was ready to save a life. He delicately approached the registration table, carefully studied the materials, and spent a few minutes understanding what he would be signing up for by doing a cheek swab. Once he became comfortable, he cleared his throat and announced enthusiastically to all of the volunteers, “I would like to be a bonor!”.

I welcome the new coinage (it’s certainly shorter than “bone marrow donor”) and, from the bottom of my well-transfused heart, I want to really say a HUGE thank you to all the bonors out there. You are the ones out there saving lives!!

Success at last! I made it into the hospital for my second round of chemo.

But our third attempt at admission wasn’t without incident. Although my platelets were actually ordered to be transfused before my Hickman procedure this time around, the order was placed for the wrong day. Fortunately, the nurses in Infusion scrambled and got me hooked up with platelets within a couple of hours so I could get the procedure.

As I walked into the procedure room, I was informed by Dr. Hickman’s very thorough nursing staff that I was getting a double-short Hickman. Upon further inquiry, I discovered that this is a slightly thicker Hickman line and somewhat more painful going in; it’s given to patients receiving autologous transplants (where one’s own stem cells are taken out before particularly strong chemo and then given back). Interesting…I thought. I’m not receiving an autologous transplant. Fortunately, I was able to have my nurses call my oncologist and get the order corrected before I was sedated.

So here’s yet another lesson in managing one’s care, especially in a large, academic medical system. I’ve discussed the series of issues I’ve faced with my oncologist, and he agrees that this is not ideal patient care - it happens when there are multiple teams and a big system. However, this is no excuse, and he has pledged to work extra hard to ensure that we are well taken-care of going forward.

As for this week’s treatment, it was delightfully uneventful! I was put on a kinder, gentler chemo regimen (similar to my first, induction round) since my blood counts never recovered fully. With God’s grace, I’ve had exactly zero side effects from the chemo so far (next week may be different). I’ve actually spent the week getting caught up on work and all the loving emails from around the country. I can’t reiterate enough how overwhelming the love and support has been!!

Yesterday morning, the medical team caring for me in the hospital told me that they’d need to keep me here for another 2-3 weeks until my counts recovered. I was not at all excited about this drastic change in plans from what my primary oncologist had told me. Since my oncologist and the medical team at the UW operate independently, I had to ask the two to talk. It was finally decided that I would indeed be going home Saturday even though I don’t have a functioning immune system at present. There are different views on this topic, but according to some, there are equal chances of catching an infection staying in the hospital as there are from going home, so back home I go tomorrow!

Reena’s off to NJ and will be at the drive at Piano’s in NY Sunday - come show your support and bring your family and friends! There are drives all over this country, so show your solidarity and let’s hit this 50,000 goal within the next month!!

I again visited the Hutch this morning for my scheduled admission this morning and, once again, I’m back home. I needed platelets to be able to get my Hickman line placed. Since it’s a surgical procedure, I needed 50k platelets for the procedure to be safe. This apparently was once again not accounted for - part of the issue is that my counts should have bounced back by now on their own but haven’t.

So Reena and I turned back and came home again today.

Another week at home is nice, but are these delays in my chemotherapy going to put me at a greater risk for relapse? My oncologist doesn’t think so, but I am realizing more and more that I need to take the management of my care into my own hands…disappointing, but true.

In the meantime, Reena and I sit here in amazement at all of the love and support that the community and the country is showing us.

This past week was spent at home with Reena, my brother, and my parents. Although I should have been in the hospital getting chemotherapy all week, I didn’t really mind the extra time at home! I spent time helping my brother, Prashant, move to downtown Seattle, enjoyed the fireworks for the 4th, played some Xbox, and even attended a close family friend’s wedding yesterday. Work-wise, I spent some time interviewing potential candidates to lead our operations in India.

So I ended up at home this week due to ongoing scheduling and coordination issues. I want to tell all of you out there that if you ever end up needing medical care, be aware that either you or your loved ones need to manage the details carefully. The doctors and nurses are managing you as one of many patients, so information and wisdom is often lost in translation. Sadly, that’s true even at the best medical institutions in the world.

My platelets (which are responsible for clotting blood) have been slow to recover so I’ve needed several platelet transfusions. There seem to have been a string of errors in managing this aspect of my care. The necessary transfusions weren’t scheduled for our trip to SF last weekend or for my admission to the hospital for chemotherapy last Monday. It seems like this has delayed my chemotherapy by a week or so…but I’m not 100% sure since we don’t get to see the doctor very frequently to ask questions.

Anyway, beware of your care. One needs to be a good manager to get good health care, not only in India, but also in the US at the best medical facilities.

I am now scheduled for a blood draw and a tentative platelet transfusion tomorrow morning at the Hutch. If that all actually happens, then I’ll be admitted to the UW Hospital, where they will put in my Hickman line and give me a round of consolidation chemotherapy. I will be receiving high-dose Cytarabine for 2 hours per dayon Monday, Wednesday, and Friday and then will be discharged at the end of the week. It will take 2-3 weeks for my counts to recover thereafter.

The good news is that they don’t have to shave the right half of my chest again tomorrow. They already did that this past Monday! : )

We landed in Newark tonight, and I picked up my father at the airport…yes, I literally hugged the 6′3″ bear and picked him up off the ground to make sure he knew I was not that sick!My brother-in-law, Deepesh, picked us all up from the airport, and Reena and I got on the phone and made a flurry of calls to all the doctors we knew. Drs. Sheth and Shah got calls, as did Dr. Jay Shastri, a close friend of Reena’s. All of them said the same thing: get to a hospital ASAP!

We knew that if the diagnosis was confirmed, the first round of treatment would last a month. My father was thinking of getting us all back to Seattle to get treated at Fred Hutchinson Cancer Center, one of the best in the world. But it was Saturday night and we would have to wait till Monday for an appointment. That’s when Dr. Shastri came to the rescue.

Jay is an amazingly caring gem of a guy - let’s just say that once but keep it in mind as you read ahead. He is a doctor at Robert Wood Johnson University Hospital, which is 5 minutes from my in-laws’ house, and also happens to be a National Cancer Institute. Jay verified that they have a strong leukemia team and arranged for us to fly through the ER that very same night.

It’s 2am and I’ve been admitted to Robert Wood Johnson. My leukemia diagnosis was confirmed - I have Acute Myelogenous Leukemia. It seems like it was caught early on, so we should consider ourselves fortunate.

I’ve never been in a hospital bed…I’ve always been a health freak and a gym rat. I’ve always known I’ll live past 100. I’ve bugged my entire family since I was in high school about exercising and eating right. I’ve always been the rough and tumble guy that could take anything. Being told that I am very ill feels very weird…

But we have a lot to be thankful to God for:

• I got diagnosed fairly early on; wait too long and the leukemic cells take over your marrow and immune system to an extent that is difficult to treat.
• I was self-aware enough to push for my own diagnosis in Mumbai and was fortunate to land in the hands of Dr. Joshi, a skilled hematologist at Lilavati.
• We have very smart doctor friends in the US who guided me brilliantly, reducing the time that it took to get me into treatment by as much as a few weeks.
• I managed to (for the first time in a long time) avoid catching any infections or colds in India. One infection and I could have been stuck in India for 2 years according to the hematologist there.
• I also made the entire journey from Mumbai to Milan to Newark without catching a cold on the plane. Again, this was miraculous considering how easy it is to get sick on a plane. One infection on the plane would have messed up my treatment since I don’t have a functional immune system.
• Finally, I’ve been admitted to a great cancer center within 40 hours of being diagnosed halfway around the world!

Above all else, I am so thankful to have my father, who has been a pillar of strength for me forever, and Reena, the most caring wife one could ever dream of, by my side. With their tremendous love and support, I don’t have a choice but to get well fast!

Some posts have been written retrospectively

Reena and I are en route from a business trip in Mumbai, coming home suddenly to the US of A.

I had been nauseous, had no appetite, and noticed my heart racing for the past 3-4 weeks. Even though it was a sweltering 100 degrees as Mumbai awaited the monsoons, I was sure something was wrong. I had never had this kind of trouble in the heat in past years.

On my insistence, our family doctor in India sent me for some heart tests. While I was at it, he told me to get a blood test as well. I went to the lab, got my tests, and then sent the results to two cardiologist friends of ours in the US. The cardiologist at the lab thought he might have seen an atrial abnormality. But our friends, Drs. Mital Sheth and Maulik Shah, honed in on the blood tests and said that something bigger was amiss.

I got my blood retested at Lilavati Hospital in Mumbai, and the hematologist there took one look and said, “You have leukemia.” I looked at him like he was crazy. I had researched a dozen different infectious diseases, a couple of which matched my symptoms identically. But he noted the strong presence of blast cells in my blood and said that there was a 99% chance that this was leukemia. He wanted to admit me in the hospital immediately.

I had always said that there was no way I would ever get treated for anything serious in India. And this was something serious. The doctor looked at me and said that I needed to get on a flight immediately then. It was 4pm.

I went home and found Reena in the kitchen hosting some guests. I slowly waited for the right moment, by which time she had already figured out we needed to talk. She was calm but worried, as one could expect. But she remained the rock that she is and focused on what needed to get done.

By 1.45am the same night, Reena and I were on a flight from Mumbai to Newark, New Jersey. We managed to get the last two seats. By a sheer coincidence (act of God?), my father happened to be returning home from a business trip and was changing planes in Newark at the same time we landed. He would cancel his ongoing journey, and I would have my two pillars of strength by my side for the long journey ahead.