The Marrow Story was just something that was lurking around as far as my life story is concerned, but I never really brought it on the front seat and couldn’t focus on it.
The Marrow Story
After I was done with my bone marrow transplantation and got back to life, I plunged into my life because I had missed about a year and a half of my life in the treatment and recovery, and I was in a desperate attempt to catch up that time. I plunged into it so much so that I went after all my dreams and goals and just wanted to accomplish them very quickly because, for me, there was a clock running in my head saying that I had already lost so much time. I ran after my dreams so fast that I completely shut out my experience as a cancer patient and a survivor because I did not want to deal with anything related to cancer at that point in time. I published a book about my cancer journey, and for me, that was it. I didn’t pursue it after that. At the back of my mind, I knew that I wanted to do something that helps people understand what bone marrow transplantation is, but I did not know what to do; I was lost. It was only in June or July 2019 that the idea of The Marrow Story began to take shape because, in the last week of June, I got the opportunity to deliver a TEDx Talk. When that happened, the first thought I had was, “I survived cancer, but what’s the big deal? Many people have survived cancer and have many side effects, but nothing of that magnitude has happened to me. That’s when I realized that if I really want to talk about something on such a big platform, it has to be about bone marrow transplantation. If nothing else, it could be educative or something that helps people understand it. Everything started coming back to me with full force about what I have been through. That’s when I understood the magnitude of my journey and that I survived because the process was made easy by God’s grace and everyone’s blessings that I managed to get a donor.
After the TEDx Talk, Datri reached out to me and asked, “why can’t we do something together,” and that’s how I got on board. We did several drives at colleges and universities where I was teaching because we wanted as many young donors as we could find, but then the COVID pandemic happened, and everything came to a standstill. When the lockdown was announced, I was actively working and had too many sessions to look after. We were struggling as teaching faculties with the online system, and I too was busy doing that.
The moment all my sessions were done, that’s when I suddenly thought, what should I do now because I didn’t have anything else to do and then it just came to the front, and my journey began. All of this was conceptualized in just two hours, and I just called a dear friend from Datri and explained my idea and that I needed their help since the only donor I knew was my own donor. I do not want to publish her story first because then The Marrow Story would become about me, and I didn’t want that. I wanted it to become about the people who are going to be there. I wanted to publish stories about Indians as my target audience was Indians since we have such a large population. Research says if any major city from India had every person between the age group of 15 to 55 signed up to donate their marrow with any registry functioning in India, we would build the world’s largest marrow registry.
I have interviewed 55 people so far, including marrow donors, bone marrow transplant survivors, and other cancer survivors. Some stories talk about friends and families who have lost their loved ones to cancer. We also did a special series on people who have mental challenges. Such people need to voice their opinions because I thought that was the only way to normalize the conversation around bone marrow transplantation, donation, cancer, Depression and mental health.
The biggest challenge is to convince people to come up and talk. There have been incidents in the past where I had published the story where the individual had not informed his/her friends and family. When the family finds out, they request me to take it down as they don’t want their relatives to know about this. I have people who approached me and said that they want to publish, but they don’t want their family to find out and do not even want to share their picture. I face these challenges, and it is difficult because there are people who really want to talk but cannot do because of the family’s pressure. We live in a society where cancer is taboo.
I have had people who come up and ask me not to mention my name as their parents are looking for a bride or groom, and if the society comes to find out about the cancer, they may not get one. To me, that’s very disappointing and heartbreaking that people would judge an individual based on their health records. The fact that people would identify an individual on the health records and not see anything else, their heart, humanity, professions, career, ambition, the fact that they could survive; this is shocking. It will take another 50 years to change, and there is a limit to the change we can instigate. We just have to build the next generation to know better.
Myths Related to Donating
People have started understanding platelets, plasma or blood donation, but it’s not the same with bone marrow. With bone marrow, people suddenly think that it is like an organ donation.
The first thing to know about bone marrow transplant is that a bone marrow transplant is not a surgery; it happens to be one of those very rare kinds of transplants where there is no Surgery. Stem cell donation is exactly like blood donation; you are just given an injection, which increases the production of marrow in your body. Through a line in your hand, the marrow is extracted, collected in a bag, and the rest of the blood is put back in your body. Since you are donating something that you had produced extra, you are not losing anything.
Even if you want to donate the marrow from the pelvic bone in the lower back, your body only takes 4-6 weeks to produce all that marrow back into your body. It’s exactly like blood donation. Many myths need to be busted, but it will take one little talk at a time.
How Datri facilitates marrow drives?
Datri was founded in the mid-90s. The person who found it had a friend who needed a bone marrow donor. People who have been actively researching bone marrow transplantation have said that there is always a strong possibility of the patient finding a matched donor within the same ethnic group. In Datri, when you fill a form, there is a particular section that will ask you what community or ethnic group do you belong to.
Datri corporates and collaborates with colleges and universities. Their representatives conduct orientation programs where they explain the entire process to the people and orient them into understanding that bone marrow donation is as simple as blood donation.
To register as a marrow donor is the easiest thing to do because there are two cotton buds, and they take a swab from one side of the cheek, put it in a plastic bag and take one more. All they need is the saliva sample, and then they sent it for the test. There is an HLA match, and these test results are entered in the records so that if I need marrow for donation, I just need to give my HLA test report, and Datri would be able to find matching donors by entering my details into their database.
If they find that someone is a close match, then they reach out to them and say that they have the opportunity to save a life as someone is in urgent need of bone marrow, and you are a possible match for them.
The more the number of people on the registry, the more hope and faith we generate for patients and their families. We insist people not to back out at the last moment because it takes away the hope of the patient and his/her family.
Every fourth house now has cancer. Shortly, we will find the vaccine for COVID-19, but cancer is here to stay. Its impact may reduce eventually, but I cannot say this with confidence.
Things you want in the near future
Bust some myths around bone marrow transplantation. Bone marrow transplantation is not a surgery; stem cell donation is not a surgery; both are just similar to blood donation with a slightly different procedure. If you are between the age group of 18 to 55, then do register for marrow donation. You can go on to Datri or other bone marrow registries. In COVID-19 times, you can order a kit at home, follow the instructions, seal it again and give it back. Talk about cancer, and call it cancer, because when you address the enemy by its name, it reduces its power. Read about cancer because you need to educate about it.
It’s essential to educate people who have never had cancer instead of telling cancer patients what they should do and what not. Don’t see your daughter or son as different. Don’t discriminate. Just treat it like a normal disease.
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