Papa's Battle with Cancer

Papa passed away in 2005 in the ICU of SGPGI in Lucknow, India. My mom and sister were outside and my brother and I had gone to buy a medicine. Two days earlier I had landed in USA from India only to turn back and catch another flight back to India after getting a call from my sister. It took me a long time to come to terms with his death from multiple myeloma, a form of cancer. I learnt so much from him. When I was a kid, I told papa that I was not interested in learning English, since that was the language of former colonialists of India. Papa told me that a language did not belong to any nationality or race, it belonged to one who knew it. If you learn it, it will be yours. That irrefutable logic quickly sank in my twelve year old mind.

After his death, whenever I dreamt about him, it was a sad dream. In each one of my dreams I knew that he had cancer and he was not going to live for too long. I cried in my dreams. His cancer was detected in 1997. The harrowing news had totally devastated all of us. After that I had spent several days crying and researching about multiple myeloma, its diagnosis, causes and treatments. I discussed his case with the top cancer specialists at UCLA. I looked into bisphosponates like Pamidronate (Aredia) that had just been proven to reduce the incidence of fractures in myloma patients. I became a member of the Myeloma Foundation and tried to learn as much about it as I could. Aredia was not available in India then, therefore I got it shipped to India. Aredia and later zoledronate certainly helped papa. His treatment using melphalan was successful and around 1999, his cancer went into remission. I felt like we had won a major battle. In 2001, papa and mummy visited USA to live with us for three months. We went around lots of site seeing and we loved it from the depths of our hearts. I was happy like a child. This was one of the most memorable periods of my life. Papa was healthy and in good spirits.

Papa thought that his cancer was cured. Either he was in denial after going through some intense and deeply aggravating chemotherapy or he just did not know much about the disease. You can read all about painful side effects of chemotherapy but only those who have gone through it can really empathize. I knew that the monster was in remission but I had no courage to tell him that. But I was getting ready for the relapse. I had read that thalidomide was proving effective in the treatment of myeloma, Velcade had just been approved in USA by FDA and there was a lot of buzz on the Internet about the efficacy of Trisenox in the treatment of myeloma. Thalidomide was used in the sixties for treatment of morning sickness among pregnant women, which resulted in babies born with deformities of limbs. These babies were called Thalidomide Babies. After that the drug was banned all over the world. After tests had proven its effectiveness in myeloma, FDA approved it on a limited basis and Geraldine Ferraro was one of the first famous people to be treated with it.

A year after papa had returned to India, I came to know that he was not keeping well. He had pain in joints and intermittent fever. Those were all tell tale signs of a relapse. I was certain about the relapse but I lacked the courage to confront the denial or lack of understanding of my parents. I stand guilty of that. Eventually, my sister and I spoke and decided that enough was enough and papa had to go through a very painful bone marrow biopsy. Papa was reluctant but finally agreed. For cancer patients the choices are very hard. Cancer and its treatment, both are more than enough to make their remaining lives extremely miserable. If cancer doesn't kill you, then treatment will.

Papa's treatment started with thalidomide and dexamethasone. Dexa was really hard on him and when he mentioned this to his oncologist, she petulantly stopped dexa right away but continued with thalidomide. This was shocking since thalidomide's effectiveness without dexamethasone is limited. His treatment using thalidomide continued for about three months with no results. Whether his treatment started late or drug regimen was not correct or it was God's will, his blood test now showed that cancerous cells had moved from bone marrow into his blood stream. At this stage survival is a month or two at most. He lived for eight months after that and at one time we felt that he had a second remission. He was treated with Trisenox and then with Velcade. Velcade was a newly approved drug for myeloma and it was not available in India. I called everyone at Johnson and Johnson but they were not ready to start selling it in India. Finally, I bought it in USA and carried it to India with me. It was really too late by that time.

Regarding his treatment with Trisenox, after his death I came to know that that off-label use of Trisenox for multiple myeloma was really an Internet hype created through unethical and illegal marketing efforts of Cell Therapeutics, Inc. (CTI). In 2008 a federal judge awarded whistleblower James Marchese $1.6 million for tipping off federal prosecutors to a scheme by CTI to illegally promote unapproved uses of Trisenox.

I still feel that if I had convinced papa to go for treatment as soon as he had started complaining about joint pain and fever and put him straight on treatment using Velcade, the chances of his achieving a second remission would have been quite high. That guilt will perhaps stay with me for the rest of my life.

Just about two weeks before papa passed away he had an episode of shingles (herpes zoster) on his forehead. Shingles is common among multiple myeloma patients. Papa was in extreme pain. My sister had asked me to come fast to meet with him. I bought a ticket from LAX to Hongkong and boarded the flight. From Hongkong, I flew to Bangkok and from Bangkok to Bombay and from there to Lucknow. That took me more than 36 hours to reach home. It was late evening, when I got home. When papa saw me standing by his bed, he smiled at me and said that I was late, since he had been expecting me to reach in the morning. That was my last conversation with papa. My aunt told me that that was the first time she had seen him smile in several days.

Papa was in pain but he did not want to go to hospital. Against his will, we took him to hospital, where he breathed his last. I'm never going to meet him again but if I could do it all over again perhaps I'd have stayed with him at home and I'd have requested the doctor to put him on some strong pain killers. While I did everything to provide all the treatment options that were available at that time, I could not do much to improve the quality of his life towards the end. That pain will stay with me forever.

The last lesson that papa gave me through his battle with cancer was that discovery of truth was not enough. Truth has to be told, whether it is expedient or not. Ultimately, we have to face reality. Facts can never be covered for too long and must never be covered. Denial cannot withstand the storm of facts. Discovery of truth requires that you always ask for evidence even from those who are respected in their profession and scrutinize the evidence carefully to ensure that the results can be applied to a given situation. Finding a solution and then searching for evidence that supports the solution will positively lead you in the wrong direction. I owe my candor to papa. His lessons are deeply embedded in my personality. Today when I state facts, which may be inconvenient to me or my team or when I ask for empirical evidence, its not a job. Its a tribute to papa from deeply embedded intergenerational learning that has become part of my DNA.