Is donating bone marrow a personal cause of mine? No, but it is something that I have had an awareness of ever since my senior year of undergrad when a friend (real talk: kind of a frenemy and this haunted me for a long time) had a bout with leukaemia and was saved for the second time by a bone marrow donation from her brother (sadly, she did not survive due to something entirely unrelated)… that experience inspired me to help my brother host a bone marrow drive back when I lived in DC… 3 years ago, I met Vijay Uncle who not only inspired my starting this blog but was and still is a huge advocate for South Asians registering as bone marrow donors… a friend of mine (who you may have heard of), Tim, started a South Asian-focused non-profit for finding bone marrow matches worldwide… and most recently, a friend of mine, Cherry Mangat, went through the experience of being a donor.
Now I can honestly say I don’t really know Cherry very well. I met her when she lived in Chicago, knew her more through friends and really never got to know her personally. Oddly enough (to you, not to me because this happens quite a bit for me), I got to know her through Facebook. As much as this will sound creepster-ish, when she moved to San Francisco, I would see her posts, saw someone who was like-minded and wished that I had gotten to know her better before she had left. As far as I could tell, Cherry was a soulful, spiritual and thoughtful person but nothing affirmed that feeling as much as when I saw her post the day she was going to be going to donate bone marrow.
I think I may have been the first person to like/comment (I know, shocking) on her post regarding being a donor because I put myself in Cherry’s shoes and imagined what a profound and life-changing experience she must be going through. I followed up with a personal e-mail asking if I could interview Cherry for my blog with lots of SM-disclaimers about “no worries if not” and “I know you’re going through the procedure as we speak.” However, Cherry wrote me back from the hospital graciously saying yes.
Below is my interview with the beautiful – on the inside and out – Cherry Mangat.
1) When did you first register and why?
I first registered for the National Marrow Donor Program when I was a Junior in college. I started out simply wanting to donate blood but I was underweight so I wasn’t allowed to give, so instead, I volunteered to organize all the blood drives on campus. Through that work, I heard about the NMDP and how hard it was for patients to find a match, especially for minorities. I thought that if I could help someone in this way it would be wonderful, and so I registered.
2) When did you receive the call that you were a match and what information was provided to you…?
I first received a call in October of 2011 that I could be a potential match. It was actually right around the time of my birthday and it felt like a gift to me; I had been in a rut and feeling sorry for myself for so many things. Getting that call was a reality check, a reminder of how lucky I was to have my health and that I could actually help to save someone else’s life. The chances of that happening are so rare, I felt like I had won the lottery!
The NMDP provided a lot of information to me, including what every step of the process would be (health questionnaire, in-person health interview, blood tests, x-rays, EKG’s, physical exams, possible methods of giving marrow, recovery time, privacy rights, a possibility of corresponding with the patient, etc). I had the kindest donor advocate and she went with me to my appointments and offered a lot of support before, during and after the procedure. All of my questions were answered promptly and since I was in SF but my family was in Chicago, the NMDP even offered to fly a relative to SF if it would help me.
3) What ran through your head when you found out (include any reactions from family/friends that you think is relevant) and what followed in regards to next steps?
When I found out that I was a potential match in October, it did not really hit me. When I went through all of the tests in December and I was deemed healthy enough to donate, I was excited. A date was set for the donation in January, but it kept moving out the month after month because the patient was not doing well. At that point, I was feeling quite sad because even though the patient was anonymous, the NMDP was allowed to tell me that she was 16 and that she had Leukemia. She was also an international match so most likely I figured she was Indian. We had never met and I did not know if we would ever meet, but I felt a connection to her and it was hard to know each month that her health still wasn’t good enough for the intense chemotherapy that she would have to undergo before she could receive my cells.
In the beginning, whenever I would meditate I would send positive thoughts to her and her family, to help them pull through. I also took extremely good care of myself because I wanted to be as healthy as possible for her, which sounds a little weird but when you know that something that is inside of you is going to be put inside of someone else, you have a whole new respect for your body and you also want to give that other person the best possible chance of surviving. I wasn’t given any restrictions on what I could do or eat or anything like that, but it was just something that came from within me to want to be in the best health possible for this procedure. But after this went on for four or five months I began to lose hope. At one point I did not think that she was going to make it, and it was a very sad time.
Then, when I received a call that she was doing better and that we could move forward with the donation in June, it was a huge surprise! I felt many emotions – excitement, anxiety, fear, love, oneness, and many other things. Everything moved really quickly so I almost did not have time to process all of the different emotions. My family was very supportive, some of my relatives even admitted that they did not think they could do something like this, but they were proud of me for having the courage to do it. I did not think of it as being courageous, to me, it just felt like something that human beings should simply do for each other. How often is someone given a chance to save someone else’s life? Some people said to me “I would do this if it was for someone that I knew, but not for someone I didn’t even know.” That was a strange thing to hear because how can we value one life more than another? If someone in our own family had a disease and we had to count on others to help, but if others also thought “well this person is not in my family” – we would never find help. As a society, I hope that we can move away from that kind of thinking.
I also had to prepare myself for the fact that I could go through the donation, and then the patient may not survive. That is a lot to think about, but, at the end of the day, I felt that even if that was the outcome, at least the patient could leave this world knowing that someone out there cared and tried to help, that she wasn’t alone in this fight. And the same for her family, at least they would have been given some hope, and some comfort. So I decided to still move forward.
I could not have done this alone; I had a lot of support from family, friends, and co-workers. Lookout, the company that I work for, was very supportive from day one and told me to take as much time as I needed to recover, and they even sent me flowers, how sweet! My uncle lives in the Bay Area and he came with me to the hospital on the morning of the procedure and stayed with me as long as I needed. I was also seeing someone at the time and he was also a big help, calming me down when I got nervous, visiting me at the hospital both days, taking care of me during the days after the procedure when I was feeling a little weak. The whole thing was an emotional and also spiritual experience; it was a good reminder of how we should not take our health for granted. It was also a reminder of how much we rely on each other for support, it was a humbling experience.
4) Since we all know where bone marrow comes from and due to what we’ve heard about the process (even if it is outdated information) there is a natural hesitation when it comes to pain. What were the actual procedure and recovery like?
There is definitely a lot of misinformation out there about the donation process. The way that I donated was actually very different than the procedure that most people think of. There are actually two ways of donating, the procedure used on me was called Peripheral Blood Stem Cell donation (PBSC). Normally in PBSC donation, blood is taken out from one arm, it goes into a machine where it is spun really fast and the cells that are needed are taken out of the bloodstream, and then the blood is returned through the other arm. Very simple. For me, because I am petite and the veins in my arms are too small, they had to take the blood from the vein in my neck instead of from my arm. Also because of my size, this had to be done over two days rather than the normal one-day procedure in the hospital. I didn’t really feel anything while the procedure was actually happening, just a little tired and weak.
Five days prior to the procedure, a nurse came to my apartment every morning to give me a shot which helped to increase the number of blood-forming cells in my bloodstream. This was just like any other shot and I only experienced mild aches which were easily managed by taking some Aleve. After the procedure, I felt generally weak but was able to return to work after a few days. There was soreness in my neck from where the blood was drawn but that also was totally manageable. The hardest part was when they put the catheter in my neck, which was the only time that I experienced real pain. Yes, that was hard but in comparison to what the patient was going through, that was nothing.
Every single doctor, nurse, and other hospital staff that interacted with me kept thanking me and kept saying that it was wonderful to do something like this for another person. When you have all of that support, you do not even focus on anything else but the fact that this is all for a good cause, and that anything that you’re going through is totally worth it.
At this point, I know that the patient has received the stem cells, and at the end of this month I will find out how she is doing. I continue to send her positive energy and positive thoughts.
5) I can only imagine what a powerful, meaningful, and life-changing experience donating marrow has been. What has donating meant to you and what you want readers to know about registering?
I highly encourage everyone to register, it is a very simple process. The chances of being a match are very rare, but if you do get the opportunity to donate, it is a life-changing experience. I’m humbled to have had this chance to serve, it was a great reminder of how connected we all are. Life is fragile, and we cannot take our health for granted. Imagine what it means to give someone hope….can there be a greater gift?
6) & lastly, favourite quote/life motto? (I know, so cheesy, but since I asked Sacha Dhawan and am obsessed with quotes…):
I have many favourite quotes but the one that applies most directly to this particular donation experience is this one:
“I slept and dreamt that life was a joy. I awoke and found that life was service. I acted and behold, service was a joy.” Rabindranath Tagore
So, that’s all from our interview, and I hope that Cherry’s experience inspires those who haven’t yet to register. To find out how to register, please visit www.bethematch.org, and to fully understand the importance of why we need South Asians to register, please read this article, which elaborates on the fact that “only 17,000 of the nine million members on the registry are South Asian.” Vijay Uncle has said countless times that we need to register because although we hope and pray otherwise, one day it could be our sibling, son, daughter, cousin, friend or even ourselves who may one day be in need of a bone marrow donation. I hope everyone feels that way about everything – that what happens to one of us, happens to all of us – and that if you have not already registered, that you do and encourage others to do the same.
Thanks always for reading and write soon,
“Giving of any kind… taking an action… begins the process of change, and moves us to remember that we are part of a much greater universe. ”
― Mbali Creazzo
“I want you to understand that your first duty is to humanity. I want others to look at us and see that we are not just about ourselves but about others.”
― Madam C.J. Walker