Dealing with the Emperor of All Maladies!

Until five years ago I had no idea that there was a book and a documentary titled The Emperor of All Maladies: A Biography of Cancer by Dr. Siddhartha Mukherjee. But in February of 2015 came a diagnosis that introduced my husband and I to this emperor personally.

It all started with a mouth sore that had been bothering my husband for a few months. His dentist said it was just an infection and put him on antibiotics but we didn’t see any improvement; in fact, it only kept getting worse. A visit to his general physician set things rolling with appointments, a biopsy, and a diagnosis that left us completely baffled: Squamous Cell Carcinoma — a type of oral cancer. From then, our days were filed with appointments, scans, multiple opinions and a load of information that left us dazed to say the least. At this point, only a cousin and an aunt who is an oncologist were aware of the happenings and they provided a lot of solace and support as we navigated through the information.

Though the word cancer hit us hard, it was clear that we needed to be positive and strong to cope with the situation. I wouldn’t be exaggerating if I said that except for the initial shock, my husband has been brave and positive, if not for himself, definitely for the rest of us in his life.

It was at this point that our cousin told us about a documentary, The Emperor of All Melodies. At first, I did not want to watch it partly because I feared having to see disturbing sights and also because I was already overwhelmed with information. But I am glad I watched it. The film was very informative and explained the evolution of cancer treatment and how doctors were using advanced technology to treat different types of cancers. Dr. Mukherjee and his team have definitely done a wonderful job in educating lay people about cancer, its diagnosis,prognosis and treatments. It surely left us with a ray of hope as we went through the process of meeting different doctors and understanding treatment options. Considering my husband’s age and the location of the tumor, most doctors recommended surgery. In simple terms, the surgery would involve the removal of the tumor (in his cheek) and reconstruction of the area using tissues from his arm (technically called a forearm free flap).

It took us three months to get from the diagnosis to the surgery, and boy was it a big surgery! The doctors estimated that it would take 8-10 hours and those were probably the longest eight hours of my life. After about four hours, the ENT surgeon came out and said that the tumor had been removed successfully and that the next procedure had already started and would take 4-5 hours. Later, the plastic surgeon also had positive things to report and said that everything had gone as planned and the most critical thing to watch now would be the working of the reconstructed area.

As I sat in the waiting area, I spoke to other families there. I especially remember a lady in her 70s, whose 80 year old husband was undergoing a 12-14 hour surgery for a brain tumor. Talking to her and her daughters definitely helped me keep my nerves calm.

Though the surgery was successful, the post-surgical biopsy showed that the cancer had spread to one lymph node, which meant that there were higher chances of it spreading to other parts. Hence, radiation and chemotherapy were highly recommended and that was the route we took. He braved through the whole process, the pain, inability to eat, fatigue and all, impressing the doctors and nurses with his grit to win this battle.

We embraced the clichéd ‘new normal’ that involved keeping a close watch and regular follow-ups, trying out yoga and meditation, switching up our diet and so on. Two years into the journey, he started complaining of pain on the roof of his mouth and we noticed some abnormalities; the cancer was showing signs of returning. Luckily, it was caught very early and he underwent a relatively simple surgery. Another year went by without any bumps, but come December 2018, we had to go through more biopsies. He underwent another major surgery in 2019, similar to the first one, but with more risks because the tumor had returned in the same location. This time around, we had my parents, his mother and a cousin here with us for support and the surgery went really well. Our mothers stayed on for three months and even though it was pretty clear that they were extremely worried, they put on a brave face. It was mutual, we stayed brave for them and they for us. And that probably helped immensely with his fast and smooth recovery.

I feel that we have just been very lucky to have received the best possible care, from the best doctors in town. We have also been blessed to have the constant prayers and support from family and friends, which I believe has played a major role in his recovery and our entire journey. Five years back, when he met his general physician after receiving the results, she had asked him, “Do you believe in the power of group prayer?” I wasn’t aware of the term then, but now I know what it means. A group prayer happens when a number of people, regardless of where they are, pray for you and send positive vibes to help you get through whatever trauma you are undergoing. I am not personally the praying type, but I will forever be grateful for all the prayers that continue to come our way.

Cancer is a difficult term to digest! It has been five years but its hold on the mind remains like a dull throbbing headache that never goes away. The constant fear of a recurrence, the battle scars and the pain remain, but I guess that’s all a small price to pay because five years, three surgeries, 30 days of radiation and three chemo therapies later, he is still the same brave, positive soul whom I love.

Only a handful of our relatives and friends knew about this; we chose not to tell everyone because we felt it was our battle to fight. I finally decided to share this now because I felt that our experiences — the positives, negatives and everything in between — may be useful for others experiencing tough times. Staying positive helped us traverse this challenging path and it will surely help you too. Today, after we have crossed the five-year mark since the first surgery, we seldom dwell on the past. We focus on the present and constantly strive to make sure that our future is happy and healthy. Remember that cancer may be the emperor of all maladies, but some things are in our hands: our positive outlook, the endeavors to be joyful and the passion to live life to the fullest.