Before joining Cancer Commons in 2021, Kaumudi Bhawe, PhD, spent years leading new advancements in cancer research and treatment. But before that, cancer touched her own life in a very profound way. Here, she shares her story and outlines 5 helpful steps for other families dealing with cancer:
It was the beginning of January 1986, and as a fifth grader in Houston, Texas, I was excited because we had recently gotten to visit our middle school and see what would soon be our sixth-grade lockers.
Wow, sixth grade meant so much freedom and so much responsibility! I was almost ten, but I felt as good as an adult already. For example, I knew I was good at spelling and academics in general, so life was set on that front. I knew I could grow up to be a teacher, or an astronaut, or whatever I wanted to be—that’s what my dad told me.
But I wanted to be a scientist. I loved how science gave us clues about the world around us. I mean, to think that there were plants that ate insects, that comets were actually made of ice, and that our bodies contained hydrogen atoms that were probably as old as the birth of the universe! It was all so exciting, and there was so much to learn.
Meanwhile, that January, I was annoyed that my parents had not let me go to my friend Melissa’s house for her high school sister’s party; but I would get over it. Especially because my dad had promised to take us all out to ice cream near Bluebonnet hill. My mom was nice, but it was my dad who really understood me, even though he did sometimes take my younger brothers’ side when it was really not my fault.
Also, I was facing racism in class, where my classmates thought India consisted of elephants and men in turbans roaming the streets. They would ask me why I didn’t go back “home” where all my aunts and uncles and cousins lived. It was my dad who explained to me how to deal with this, and how to give witty comebacks.
So, all in all, life was great.
Little did I know that the next four months of my life would change everything we knew to be true as a family. It was in the middle of that January that my parents would come to know of my father’s lung cancer diagnosis, and it was later that month that my father would explain how he was an old man who would die soon.
I did not understand it. If my dad’s back was hurting, then how come his lungs had the cancer? We were taught in school that smoking could cause lung cancer, but my dad never smoked; in fact, he strongly abhorred smoking. This was so unfair.
I kept telling my dad he wasn’t really that old, but he would not listen to me. It annoyed me. I remember asking him, “Well can’t the doctors make you better?” I was angry at the doctors too. It was not fun. I felt guilty that I enjoyed the Almond Joy or KitKat from the vending machine at the hospital my father was in. And the worst was when I saw that my strong and muscular father was reduced to a wheelchair where my thighs were actually thicker than his. It was so repulsive a feeling, it made me want to puke.
I hated my life. I hated everything around me, and I had no control over it. I failed in saving my dad. I withdrew into a shell.
From anger to action
That year my mother learned to drive, sold our house, took care of us, shipped crates to India, made sure of my sixth-grade admission to school in Mumbai, and sent me off to my paternal aunt’s place in time for school to start. She would join later with my brothers, to stay at my maternal aunt’s place.
India turned out to be a blessing in disguise. I felt “at home” in my skin and with my cousins (even though they periodically teased me about not really being a “true Indian” on account of my citizenship). The unconditional love and acceptance we received from friends and family was priceless.
But I would never forget how rudely my father was snatched away from me. All because of a disease for which the doctors could do nothing. Now as I look back, I see that my anger stemmed mostly from my perceived loss of control.
As it stands, none of us truly have control over the larger workings of the universe. However, at least we can take comfort in knowing that our actions do play a role in determining outcomes. So that even though we may not be able to control the final outcome, at least we can feel good in a deep way when we know that we have left no stone unturned in our efforts.
This is where the gap still exists. Doctors try everything they can in their realm of possibilities. Patients use all their resources in an effort to cope. And families—especially children—are often truly “lost in translation.”
How do we address this? Especially when the options are hazy and the timelines unknown?
5 steps for families facing cancer
Having been there myself, and then having seen many families go through this process, I have identified a few solid steps that might help other families facing the same situation mine did.
These steps could be applied to any instance of uncertainty, but surely to that of cancer. I list them here in the hope that they may be helpful for families in the future:
- Know that you are not alone. Facing something like a cancer diagnosis for you or a family member can be extremely isolating. You might start feeling like no one understands you. Or you might feel like you have to put on a strong face all the time to give the least trouble to others around you. Remember that life goes in cycles. There are always times and places to give help, there are times and places to receive help, and neither is on a morally higher ground than the other. We are all humans stumbling along together on this journey called life.
- Talk to your children. Depending on their age, be as open to them about the disease as you can be. If it is difficult for you to talk to them, make sure you identify an adult who can do so in a friendly, knowledgeable way. I remember seeing the first sign of light as a ten-year-old when my paternal aunt showed me a picture of a DNA molecule and explained to me that cancer happens because of mistakes in the way DNA is copied by cells. That was the first time I felt like I had some personal handle over what had happened to me and my family.
- Acknowledge that different people in the same family may process grief in different ways. Even siblings will each have their own way of processing what is happening in the family. Some people externalize their feelings while others my take the pain and hide it deep within themselves. Provide an outlet or a “safe space” for every member of the family including yourself. This is so much easier said than done, which is why it is important to be connected to “a village” that can help you and your family get through this phase of life.
- Reach out to organizations like Cancer Commons, where a whole team of professionals has come together precisely for one cause—to help you. Take advantage of that, and if you participate in trials such as XCELSIOR, your data can in turn help patients in the future.
- Remember and explain to your children that cancer, like all large diseases, is here to teach us humans something. You are not at fault for what is happening to you, and you might not even be able to change all of it. But regardless of what happens, please know that your light is essential for this planet. The disease can affect your cells, and we scientists and doctors are trying our very best to help your body fight back. But the light of your spirit is much deeper than that, and only you can help us help you.
With much love and gratitude,
Kaumudi Bhawe, PhD, Cancer Commons Scientist and a Cancer Patient Family Member