‘I Thought I was Invincible!’
This World Cancer Day, we bring you the heroic journey of Dilip Kumar Mevada, diagnosed with complete paralysis due to Multiple Myeloma, a rare cancer, who conquered the illness with an amazing team of doctors, supportive family and resolute power of the mind. Read his inspiring story in his own words.
At 48, I had the world at my feet. A beautiful family, a very successful architecture and interior design practice, and a future that promised bigger, better and more in all aspects. I thought I was invincible!
One of the very few times I decided to take some downtime, the family and I headed to New Zealand for a much awaited holiday. The holiday was full of fun, sightseeing, activities and adventure sports. The day before we were to head back, I woke up alone in my hotel room, unable to move and with an unbearable pain in my lower back. Getting out of bed to even use the bathroom was a herculean task. To someone who had boundless energy and perfect health, being unable to move the lower body was unimaginable and scary. I did not even realise that all of a sudden I am in complete paraplegia. The date was 3rd June, 2010 and will stay in my memory forever for all the wrong reasons.
I came back to India in a wheel chair and headed straight to Lilavati Hospital where after a battery of tests and MRI, I was diagnosed with the complete paraplegia due to cord compression in dorsal spine by a tumour. I had no options other than spine surgery as doctors were of the opinion that if I didn’t then I may not be able to walk and would be confined to wheelchair only. On an emergency basis I underwent a surgery that opened up my back to remove the tumour. I was advised to take complete bed rest for at least 6 months lying down straight on the bed and continue with exercises so that I may be able to walk again.
Diagnosed with Multiple Myeloma
It was a big blow for me when biopsy report confirmed the dreaded big ‘C’ with Stage III of Multiple Myeloma, which is a cancer of plasma cells in bone marrow, one of the rarest form of blood disorder. Multiple myeloma is considered to be incurable but treatable. That done, the next on the list of treatments was chemotherapy which was to be started immediately. We have all heard horror stories of the effects of chemo – falling hair, vomiting, loss of appetite and a general inability to deal with life.
From that fateful day in New Zealand, I had been generally swept up in a haze of doctors, medical terms, hospitals and hushed tones of conversation all around me. As a man who was used to being in charge and who had completely lost control of his life, I decided to get back on the driver’s seat. I asked the doctor to delay chemo by 4 days. I told him that I would be back 4 days from that day and would then follow all that he said meticulously for as long as he said – but that I needed these 4 days. On being asked what I intended to do in these 4 days, I replied – “I am going to offload the burden from my shoulders and set my house in order, and then I will come back to see you and I will walk into your room.” The look on the doctor’s face clearly said that I don’t know what I was talking about. The surgery that I had just undergone generally kept patients in bed for about 6 months, and here I was aiming to walk in 4 days!
Four Fateful Days before Chemo
I am a great believer of lists. I think clearly when I make lists and I feel efficient when I tick off the items on the list one by one. So, to take back charge of my life, I made a list. Think positively, targets for the next few years, the roadmap to achieving these targets and finally, all the paperwork to be done to ensure the financial safety of my family. The next 4 days were a whirlwind of activity of trying to get to my feet and walk, preparing and signing powers of attorneys and explaining to my young son, what he needed to do in the worst case scenario. I spoke to my family and gave them strength to face the future, and found strength in their belief and confidence in me. To them, I was, and still am superman!
I Can’t Die, I am not a Coward
Three days after diagnosed with Multiple Myeloma, I was completely devastated and my life had surprised me by heading towards the end. I got up with a thought of “I want to die” followed by a thought of “I can’t die, I am not a coward” the next thought was “I don’t want to be a paraplegic and be on a wheel chair” and finally with the thought of “Getup and eradicate the disease”. I got up by taking my weight on shoulders and gradually started moving. It was my constant practice and belief of getting healed and cured completely, I started walking. It took me almost 28 long months to walk normally.
On the 5th day, I walked into the doctor’s office, albeit slowly, but to my satisfaction and to his immense surprise. Recognising my will to face this disease and not just survive it, but to thrive in spite of it, the doctor decided to replace injectable chemo treatment with oral medication. Oral chemo can be had at home while the patient goes about his life as normally as is possible. After 3 rounds of chemo, which my body reacted to positively, a whole range of blood tests showed that the almost impossible had happened! The cancer was in very good partial remission.
I believe that Mind Dictates Body
I truly believe that the body is a vessel of the mind. It can be directed by the mind to behave and react as it wills. If the mind is strong and shows the way, the body follows in its path. I have a genetic background in which over most of the people in my family have succumbed to some form of cancer, including my father and most of my closest relatives. By default, my mind went to a dark place thinking that being diagnosed with cancer was the beginning of the end. But, I had to remember that I was a person who never gave up and that I had made my life the success it is from very humble beginnings only because I willed it! I used the same power and strength to eradicate this disease. I decided that my vision for my life would not change because of this disease; in fact, this disease and eradicating it would enrich my life and add a dimension that till then did not exist.
Stem Cell Transplant
After I went into very good partial remission, the doctors, who initially prescribed radiation therapy as part of my treatment, which was also avoided by my will power and mind games, changed their minds and recommended Autologus Bone Marrow / Stem Cell Transplant. At this stage I thought I must get this transplant in US or UK, which was an expensive affair. My business had a downfall, both sons were in college, treatment costs and maintaining regular expenses were difficult, and I decided to sell my office and home too.
After many opinions and consultations I decided to do my transplant in relatively lesser known Prince Aly Khan Hospital, Mumbai. It is a difficult treatment which includes being sequestered in a sterile environment for weeks at a time since the patient’s immunity is almost non-existent. I used this time to make my mind stronger to decide what I would do with this new lease to life I had got. I wanted to help others who were afflicted by the same disease and decided to make a difference. The opportunity presented itself when my doctor called me one day and said that he had another patient who was suffering from the same condition that I was, and who was very disturbed mentally and asked if I would share my experience with him. I readily agreed.
Myeloma Friends Charitable Trust
Little did I know that, that first call with a patient would be the start of something that gives me immense satisfaction and energises me on a daily basis. This inspired me to institute a non-profit organisation called MYELOMA FRIENDS CHARITABLE TRUST along with my doctors, few survivors and their families. The slogan of this organisation is CANCER, SO WHAT? OVERCOME IT. And aim is deal with E.A.S.E.
E=Educating people about Multiple Myeloma
A=Awareness. Spreading awareness about Myeloma
S=Support. Support by counselling, providing information, caregivers
E=Evaluation by expert Doctors.
We have been able to register it as a charity so that all the funds we collect can be utilised to help patients and also to ensure that benefactors can get a tax break. We are in the process of using the power of social media to reach out to more people and encourage them to be involved in any way they can so that we can work towards a larger impact.
Today, I speak to and counsel dozens of patients all over the country and beyond. Some I speak with on the phone and some I meet with in person. I listen to them, their fears, their concerns, and I share my experiences with them. I instill in them courage and confidence and try and help them in any way I can. If any of them is able to face their treatment in a better frame of mind and with a new will to live, I think I have succeeded.
My journey continues. It has been nearly 6 years now from when I was first diagnosed with cancer. I have made some radical shifts to the way I live. I work continuously and consciously to keep my mind strong and focused on the things in life I think are important. I sing, I drive, do yoga and be happy. I make time for people and keep out stress as best as I can.
For the future, my dream is to start a charitable hospital for the treatment of cancer patients. It is still a distant dream, but I am using this platform to reach out to others who may have similar goals and to ask them to join hands with me so that we can work together to make our dream a reality.