Of Hope, Inspiration and Indomitable Spirit!
“We each live our lives wearing a magical amulet, until one day that amulet falls off. And all of a sudden, you become aware of each and every thing that you took for granted, that you assumed would work perfectly well. You become hopeful about it, and you become very grateful for every little generosity that is shown to you. I too lived that charmed life till 1997, which is when I had my first bout of Hodgkin’s Lymphoma,” reminisced Subha Barry as she began narrating her soul-stirring journey against cancer.
“The year before I was diagnosed was particularly a difficult year. I had repeated infections; I had an immune system that just struggled, constant cold, low-grade fevers and body aches. As workingwomen, and especially as homemakers, we often put our own health last. And I did that too! … Attended to everything, popped a few pills andhoped that it would be gone. But it wasn’t, as my own immune system had broken down.”
“When I was first diagnosed with cancer, I acted very pragmatically. I was treated at the University of Pennsylvania, wherein I barreled through 7 months of Chemotherapy. I would take Chemotherapy on Thursday evenings, after working from Monday through Thursday, rest from Friday to Sunday, and despite the acute neuropathy, have either my husband or my mother drive me to work. Nothing really changed or stopped, I just kept going. And when you do that, you show your body a certain disrespect, which I was not aware of then. I was being disrespectful of the struggle my body was facing”, she exclaimed in her calm soft voice.
“Within two years my cancer came back. I had yet another round of Chemotherapy, but the disease recurred in 2002. However, by this time I had exhausted the traditional Chemo options. So they shut my system down and rescued me with a stem cell transplant. I was in the hospital for over a month, and it took me about six months, from start to finish, to recover.”
“By then, I had woken up to the fact that this disease was not going to come and leave. It was going to stay persistent, and I had to be very respectful of it. This is because; it was essentially a message from my own body to say that I was not being good to it.”
Looking back she said, “The one thing that I recognized along the way, which I took for granted was my sleep. By the year 1997, I was sleeping only about 4 hours a night. I was convinced I had conquered sleep. I had so much to do… I had literally two full-time jobs, I served on the board of a number of non-profits, I had young children, and in fact my son was not even two when I was first diagnosed. So I had a lot going on in my life, and somewhere I figured I could sleep less, as that was the only thing that would give. There where only 24 hours, and I decided to sacrifice three hours of sleep each day so that I could catch up on other things.”
“Even then, I believed that there would always be medical options. However, when the cancer recurred for the fourth time, after the transplant in 2004, I had no options. An allogeneic transplant, meaning a matched bone marrow from a donor was my only choice. A worldwide search was made, but since South Asians are not well represented in the bone marrow registry, I couldn’t find a donor. I was working with Merrill Lynch at that time, and they too did a bone marrow drive through their offices in India. And while they found a lot of people who matched my brother and sister and two of my cousins, I just couldn’t find a match. So they suggested getting a mini allotransplant, which meant that instead of a 9 or an 8-point match, it would be a 4 or a 5-point one wherein the risk of mortality was very high. After weighing the options, I decided that if I really had a year to live, I was not going to live it in a bubble, and that I was going to spend that time with my children and call it a day.”
“That is when the miracle happened to me.” And saying so Subha’s eyes lit up. “I met an amazing doctor, Dr. William (Bill) Hait, who ran a cancer center in New Jersey. There was a hematologist oncologist on staff named Dr. Roger Strair, who told me that there was an experimental protocol in Houston and that while it may not help me, it won’t certainly hurt. So I signed up for it, and went to Houston. This is for those of you who need to find hope; science is making such amazing progress everyday that you only have to survive long enough till they find the next cure, because it worked for me!” Elaborating on her condition she said, “The Hodgkin’s disease in my body used a mutant Epstein-Barr virus, which instead of having the normal nine proteins on its surface has only three, and as a result, it cannot be screened out. And since the T-cells don’t destroy the virus, the cancer cell hides itself inside it and grows till it is powerful enough to launch an attack. That is why, each time I was diagnosed, it was always at stage 3 or close to stage 4.”
“So they took the T-cells out of my blood, trained them in a PEI traditional lab to recognize the 3-protein Epstein-Bar virus, and replaced them. And my own T-cells destroyed the virus, as well the cancer. Can you imagine? Thus, I would fly out to Houston in the morning and go straight to the hospital. There they would give me a Tylenol, sit there for an hour, jump on a plane and come back home. And it had absolutely no side effects or reactions. This is called gene therapy, and this is at the forefront of what is happening in Cancer treatments today.”
“However, this went well till about 2 years later, as the cancer cell secretes a chemical that wipes the memory of the T-cell, and with it, all of a sudden, the T-cell forgot that there was a 3-protein Epstein-Barr virus, and the cancer markers came back. But thankfully, they had already found the next stage and were able to treat it. And here I am since 2007, I’m feeling well, and even though I’ve had five bouts with Hodgkin’s Lymphoma, I’m leading a relatively normal life”, affirmed Subha. “Unfortunately, I also had a bout with breast cancer as well in 2012, most people believe it was a result of the Chemotherapy I took. It was detected early; so I needed no Chemotherapy or radiation, just a mastectomy and a reconstruction, which was a piece of cake compared to what I had been through.”
“Unfortunately, I also had a bout with breast cancer as well in 2012, most people believe it was a result of the Chemotherapy I took. It was detected early; so I needed no Chemotherapy or radiation, just a mastectomy and a reconstruction, which was a piece of cake compared to what I had been through.”
“When I look back, I think about the immense love and support that kept me alive through my painful journey. My mother, husband, my children, siblings, friends, and teachers at my children’s schools, colleagues, and clients; the outpouring support and prayers that I received was remarkable. I am so grateful to live in a community that cared. I became acutely aware of every single act of generosity that was shown towards me. I began to appreciate, to pause and to take tally of the blessings that existed in my life.” “It’s sad but it’s true that it takes a tragedy for us to appreciate the goodness that exists in the world around us. So here are some lessons learned:
1) There are five ways in which our body energizes, i.e., through breathing, food, sleep, meditation and exercise, and none should be compromised.
2) Listen to your body – I think some of us may be better at it than others, but the earlier we learn to listen to it, the earlier we can address issues instead of waiting for them to become magnified and acute. For instance, if I know I may be going to bed late, I make sure that I cancel my morning appointment and get that extra hour in the morning. I don’t compromise my sleep anymore, as I’ve realized that I heal when I sleep.
3) Learn to lean on people – As professional women; we tend to believe that we ought to do all of it by ourselves. But it is important to lean on others as by doing so; we give them a chance to lean back on us. And when we don’t, we are essentially telling them, ‘don’t bother coming to me for anything’.
4) Live in the present moment – I really appreciated knowing how to do that because I couldn’t do much about the future, and sometimes it was just so nebulous that I learned to appreciate each moment, each day as it came.
5) Become an observer in your own life – This is particularly true for any one who may have had Chemotherapy or any kind of dramatic health issue, you know that sometimes the pain and the suffering is so great that you just cannot let it sear your soul. And the only way to get through it is by stepping out and allowing your body to experience it, and not really allowing you, the thinking part of you to feel it. And so being that observer allowed me to walk by my side and go through what I had to go through, without changing who I was fundamentally.
6) Live life with an attitude of gratitude – We say that easily, but I got to live it, and I learned how to be kind to myself. You have to be kind to yourself before you can be kind to others, so for those who talk about generosity and kindness, you have to start with yourself.
6) Live life with an attitude of gratitude – We say that easily, but I got to live it, and I learned how to be kind to myself. You have to be kind to yourself before you can be kind to others, so for those who talk about generosity and kindness, you have to start with yourself.
7) Give back to society – I volunteer on several boards, and I give my time,my money and my Rolodex. But I only get involved in causes that I have passion for. I look for organizations thatcould really benefit from my skills, be it strategic visioning, financial acumen or sales and marketing. And the most important one is, I like to work with people that I like, respect and trust. And if any one of the three isn’t there, I walk out. Life is too short to adjust and make do and go along, because it sounds good or because someone gives you recognition for it!