An Italian Interlude

I love Italy. Especially in the summer. Beautiful places, lovely people and fantastic food. Not only I but Roshini and the kids also like Italy and we try to plan our summer holidays there. This summer was special, we couldn’t go the previous year since Papa was unwell, he passed away later in the summer and we cancelled our holiday. Also Dhruv had been away to College in the USA and this was our time together, just the four of us.

Roshini and I planned the holiday very carefully, a few days in Como and then Lucca for the summer music festival. Watching Earth, Wind & Fire, Lionel Ritchie, etc perform in the evening in the historic piazza of Lucca was going to be the highlight of the holiday. First few days were idyllic, spending time on the lake, exploring tiny villages on the hillside, having lazy long lunches in some of the most beautiful tavernas and being together was everything we had planned for.

The only challenge was that I kept getting tired. On the second morning, I dragged Dhruv out for an early morning run by the lake. Half way through I was so exhausted that we had to slowly walk back. I felt fine after some time and dismissed any concern thinking it was really hot, we had just taken a long flight and I was probably still a bit jetlagged. Otherwise the holiday was fun, we drove around a lot and spent time in quaint little places by the lake and the mountains. But the tiredness stayed, often after a long day, I would ask Roshini and the boys to go walk around, I would sit in a bar and have a glass of wine. All of them pulled my leg by saying I was now turning old and couldn’t keep up with them.

After a lovely week in Como, we drove across the Tuscan country-side to the walled city of Lucca. It is such a beautiful place. Narrow cobble-stoned streets, historic churches, old buildings and awesome food served in small restaurants that put chairs in the piazzas. You can spend hours just sitting outside, watching the world go by. That week there was a summer music festival going on in Lucca. We had bought tickets, well in advance and would go in the evening and watch some of the old favorites perform at night. It truly was a holiday that we had all imagined and hoped for. But along with the tiredness I was being bothered by bleeding in my gums. I would see blood on my toothbrush whenever I brushed and some blood on the pillow when I woke up. I realized that I needed to see a dentist but since we were going back to Bombay at the end of the holiday, I planned to get it done when I was there. Roshini was a bit worried by all this and I tried to hide the bleeding from her since I didn’t want her nagging me.

I woke up on Wednesday, 13th July with a sore throat and feeling feverish. There was a strange purple bruise on my chest. This worried me a bit, I showed it to Roshini who immediately called our Doctor in Bombay. He was quite cool and said it was linked to the aspirin I had been taking and should stop it. So, while still a bit worried we went ahead with our plans for the day. We drove to Florence, visited some art galleries and shopped a bit. It was a lovely day and driving through the beautiful Tuscan country-side, playing the favorites that Earth, Wind & Fire had performed the previous night was so much fun. But by the end of it I was really exhausted and just wanted to come home and lie down. Driving the last 100 km was a real challenge, I had to keep willing myself to concentrate and stay on the road. Even at night, we went to a nice restaurant but I was in no position to eat, hardly able to swallow anything. I didn’t sleep too well and once when I woke up at night, to go to the toilet, I realized that the bruise on my chest was bigger and I had another one lower down my stomach. So when Roshini woke up, I told her we must go see a doctor.

Early morning, Roshini kept trying to find a doctor but nothing was open. We finally located a local doctor who would see us. We told the kids to go for breakfast and pick a good restaurant for lunch while we went to the doctor. The doctor was a nice Italian man, didn’t speak much English but said my problem was of either an acute viral or some other infection but it would anyway be good to do a blood test. He sent us off to the local hospital.

Unfortunately, the hospital was quite busy and we had to wait for some time. I was in half a mind to leave and get the blood test done in a couple of days back in Bombay. But since we had come to the hospital we decided to stick around. Finally, we met the doctor, a pleasant looking, middle-aged woman. While doing a physical check, she made an odd sort of an expression when she felt my stomach and saw the bruises. I asked her what it was, she couldn’t say much in English, I gathered she wanted a comprehensive blood test done.

They drew out my blood and told us to wait. It was a long wait and it was now past lunch time. The boys were hungry and waiting for us at home. After some time Roshini went to check on what was going on. She too was away for long and I was a bit uneasy and apprehensive. So, I went looking for her. I found her huddled with the same doctor and as I got closer I saw she was crying. She just pointed to the doctor who told me that I had blood cancer.

The word Cancer is terrifying and has a sound of finality to it. The only thought that came to my mind was how much time I had left — weeks, months or a couple of years. But before I could do anything, the doctor looked at me and said tell your wife to stop crying so we can get something done. I hugged Roshini, asked her to stop crying. I was a bit confused, not sure what would happen next. The thing I wanted to do the most was go home be with my kids and Roshini and not stay in that hospital. But the doctors were trying to sort something out. I asked Roshini to call the doctors in India, find out more and call people in Unilever to seek support.

As I was lying in the room, trying to google APML (the form of Leukemia that I had) and find out what this unknown disease meant, couple of doctors came to my room. While doing a perfunctory physical examination, one of them mentioned in broken English, something to the effect — we wish no one had to choose a cancer but if I had to, I would choose the one you have. I asked him what he meant and he said that while the cancer I had was very vicious and I was in a high-risk state, this cancer did have very high cure rates. This meant a lot to me, it suggested that all was not over and it wasn’t just a question of time but I did have a fighting chance. In my mind, I thought that if there is any chance, I will do what it takes to get it.

But I didn’t have much time to ponder over my fate. Soon Dhruv and Rahil came, anxious and scared. Dhruv was quiet and acting strong but Rahil was really upset and kept asking me if I would get better or not. Strangely he kept saying who will teach me Maths if not you, something we do together but also something I know he doesn’t like too much. He made me promise that I would get better and come back home. Fortunately, Roshini was no longer crying, she had thrown herself into trying to figure out the next steps. Making calls all over the world and trying to find the best alternatives for me. Activity over-drive always helps Roshini and she seemed strong and in control, once again.

I spoke to a few people. My sister in Mumbai who I could feel was devastated by the news but was putting up a brave front. Some of my dearest friends in Unilever, who were very reassuring in terms of providing support to me and my family. However, I was most apprehensive about speaking to my mother. I was struggling to even imagine how she would react when she first heard about my illness. At her age, having lost her husband less than a year back and now with her only son diagnosed with cancer. But I was blown away when she called. She told me that nothing was going to happen to me and I would be absolutely fine. I could feel that she was smiling as she spoke to me and would be strong through this ordeal. I felt a weight lift off my shoulders.

Soon we were surrounded by a set of doctors and nurses who were planning the next steps for us. The hospital we were in didn’t have a hematology department. Instead they had found a bed in Livorno and wanted to shift me there immediately. I asked one of the doctors if I could get a second opinion or start treatment when I went back to India. But she quite rudely shut me up, saying I was still young, had a family and therefore the treatment must begin immediately. As I learnt more about the disease, it became clear that her decision to not waste any time saved my life.

I was bundled into an Ambulance and dispatched off to Livorno. The children followed in a taxi and off we went to another town. I had driven a few hundred kilometers the day before and had even walked to the doctor in the morning. But now I wasn’t seen fit to even take a few steps and had to be transferred in an Ambulance. Both of us kept trying to get more information about the disease on the Internet. APML, Blast Cells, words I had never heard of before were becoming familiar. I was beginning to read about the side-effects of Chemotherapy, something I knew was quite nasty but had never needed to engage with it.

The public hospital in Livorno was quite a sight. Old building with high ceilings, paint peeling from the walls. Reminded me of a small town Civil hospital in India. It was eerily quiet, I didn’t see a single person around. I was deposited into a large, single room somewhere in the hospital. Roshini and I were left alone while a nurse came, did a check up and went away. Sitting alone in the room, holding hands we were both left wondering how the day had changed and what fate had in store for us.

Kids arrived soon after. Roshini and Dhruv went looking for a doctor while Rahil & I were left alone. We were both together for a long time and we kept chatting. It was interesting that Rahil who is normally very quiet and rarely shares anything about himself was so vocal. He told me all about how he felt coming to Indonesia, how he coped with the changes in his life, how he prepared himself to settle down in his new environment. I too told him about my experiences that were similar when I had first gone to IIT. Maybe it was the way I was or for some other reason he felt the need to share and I was thankful for it. Lying down in the dark, strange hospital room I discovered something new about my son.

After what seemed like a long time, the doctor came to see me. He was an old Italian man, small of build and spoke very haltingly in broken English. He was carrying a printout that he had taken off the Internet, it was the treatment protocol I had to go through. We could understand most of what he was saying — the treatment for the disease was well established and the cure rates were good, almost 80%, but the treatment must start immediately. While he didn’t inspire too much confidence and the printout in his hand worried me — was he doing an Internet research on the disease like we had been doing since the afternoon? Regardless, his manner was reassuring. He was a calm, wise man more like a priest than a doctor.

By now I could feel my condition deteriorating. The couple of purple bruises I had on my chest had spread to other parts of my body. From what I had read, these were all signs of internal bleeding which needed to be controlled. My throat had completely closed and it was impossible for me to swallow anything, even drinking water was difficult. I was exhausted, didn’t even have the energy to turn in the bed and kept lying in the same position. All I wanted was for the doctor to start doing something and control the bleeding but everything seemed to be moving in slow motion.

The doctor came back after some time with a couple of nurses and a medicine called “ATRA”. He said this was the most critical medicine in my treatment and would control the internal bleeding. However, I just couldn’t swallow the capsules because my throat was totally inflamed and it wasn’t possible to give the medicine intravenously. So, he asked the nurses to open out each of the capsules, take the liquid from inside on their fingers and massage it into my gums. The two nurses started taking turns and began this process which took a long time. They couldn’t speak English, it was not possible to talk to them but their manner was very comforting. I was just grateful that they were willing to patiently sit beside me and slowly rub the drug into my mouth.

I kept slipping in and out of sleep all through the night. And this was the first time I really confronted the thought of dying. Was this the end? What would happen if I was to die. Would it be like going to sleep and then everything just ends, shuts down. Or would it be more like the stories, I had read of people with near death experiences where you move towards a light and hover over your body and then go away somewhere. And where do you go, who do you meet? Strangely I didn’t feel any fear or anxiety but I did feel sad that I would not see my kids grow up nor spend more time with them. I would leave Roshini alone at a time when she needs me the most. And my mother in her old age. When I slept, I kept dreaming of my father who had passed away a year back. I don’t remember much about the dreams now but I do know he was in them. I would get up feeling concerned — was this a sign that he wanted me with him and my time here was coming to an end. All in all, it was a strange surreal night.

I was woken up by the Doctor who wanted to perform a lumbar puncture and take spinal fluid out to test for leukemia cells. This is the definitive test to establish the presence of Cancer. While he didn’t say so but I could feel that he was very concerned to see my condition. I had bruises all over, my body was swollen and I could hardly move. He did the surgical procedure on my back and then said he needed to get blood to start immediate transfusion. I only had Dhruv with me who had stayed the night there. As I lay on my front I could feel the bleeding continue and it felt like I was running out of time. Dhruv also seemed very anxious but we could do nothing as we waited for the Doctor to return. Finally, Dhruv went looking for the doctor and found him waiting at the blood bank to get them to release the blood packets that could be transfused to me. The Doctor was behaving more like a concerned family member than head of the Cancer Unit in the hospital.

Once the blood arrived, there was a flurry of activity and the transfusion started. The very fact that something was happening was good. The Unilever Doctor in Italy arrived having driven through the night from Milan. I was really grateful for his presence, finally there was someone who could speak the language and communicate with the hospital staff. Rest of the day passed by quietly, all of us sat in the room, talking about the disease, treatment and the next steps of what needed to be done while the blood transfusion continued. We were all keen that we move to a bigger city and a better hospital where the treatment would continue. Unilever was absolutely fantastic and ensured that we didn’t have to worry about the logistics, it was agreed that we would move to Milan as soon as I was stable enough to make the journey.

I spent another couple of days in the hospital in Livorno and was then in a position to be moved by ambulance to Milan. I was totally taken aback by the resilience and strength Roshini was showing. She managed all the logistics, packed up our stuff that was still in Lucca, gave up the rental car that was lying in the parking lot, spoke to people all around the world figuring out the best hospital, doctor for treatment. She knew almost as much about my disease as the doctors, she was challenging them on the treatment and each medicine they were giving me. I am sure the doctors and nurses were brushing up on their own knowledge of Leukemia before they came to my room, knowing Roshini would confront them. Both Dhruv and Rahil were very upset but were putting up a brave front. I was really happy to see Dhruv act like a man supporting Roshini and helping Rahil through that period.

The nights were tough. I didn’t get much sleep. My entire body would ache when I was awake and I would keep trying to sleep which would make it worse. When I slept, I would get strange dreams and nightmares that would wake me up. So in some ways staying awake at night was better.

Finally, three days after we had come to Livorno we were allowed to be moved to Milan. Physically I had transformed during these few days, I had put on almost 6Kg of weight because of the enormous amount of blood that was being transfused into me to keep the platelet count up and control the risk of hemorrhage. I was not in any position to walk, even going to the toilet was arduous. But I was glad to be moving on to the next phase of my journey.

As we were being discharged, I asked Roshini to take my credit card and make the payment to the hospital. We were totally taken aback when the hospital said we didn’t owe them a penny. Nothing for the hospital and tests done in Lucca, the ambulance from Lucca to Livorno or the entire treatment in Livorno. And when we asked, the Doctor told me that medical treatment in Italy was free, even for a foreigner who was visiting the country on holiday. The quality of treatment you get is not linked to your ability to pay but to the severity of your condition. Given my precarious condition I was given the best treatment, not because the hospital would make money but because it was their responsibility to keep me alive. We were both so grateful to be in a country with such an evolved way of taking care of all human beings. I hoped one day my own country with so many unfortunate people with problems far worse than mine would also have the same way of treating people.

I was almost sorry to say good-bye to the nurses who had taken such good care of me. I was really touched when they all came down with me and each one said a prayer for me as I got on to the ambulance. But Dr Capochianni was really the special person there to see me go. He had written a note which I have saved to this date, in it he said that there was a reason why our paths had crossed and he was privileged to have taken care of me. He was sorry that I hadn’t stayed back for my entire treatment in Livorno so that he could have sent me home totally cured. I didn’t have words to thank him enough but promised him that I would come back one day to thank him, if I got well. I was truly blessed to have met complete strangers who had gone to incredible lengths to help me and give me a fighting chance to get well again.

The ambulance ride to Milan was interesting. It was a warm, sunny typical Tuscan day. But from the way I was placed in the ambulance I couldn’t see anything outside. I kept visualizing how the world outside would be looking. The lovely countryside, the green hills, the medieval forts on them, tiny rivers flowing below. If nothing had happened, I would have been driving back to Milan to take the flight and now I was in an Ambulance. But my spirits had really lifted. After a long ride, we reached the hospital in Milan. It was modern, looked very high tech and everything was efficient. Because I was feeling happy and positive, I insisted upon walking inside the hospital and not being wheeled in. In my heart, I felt my problems were getting over, little did I know that my ordeal was just beginning …

The lessons I learnt in these 4 days.

  1. Everything changes in an Instant. And yet in pursuit of the urgent, we leave so many important things in limbo. The most important being the relationships that have fallen by the side, people we care for but haven’t told them so, friends who we are no longer in touch with. We don’t know what lies ahead but today we have the opportunity of accomplishing all that is important so that we don’t have regrets in the future.
  2. We must take care of ourselves. We dismiss small things that we experience, a headache or an unexplained blister or even bleeding gums. We can be of value to others and ourselves only if we are healthy and in good condition. Take care of your health, you may ignore it now but would value it dearly if you don’t have it.
  3. Truly get to know the people who matter the most to you. I learnt new things about my closest family members during this period. Why did I have to wait for something like this to happen to have the conversations that matter?
  4. The world is made up of incredible people. I met strangers who went out of their way to help me. I am alive today because of them. And they did all they could without any ulterior motive. We see and read news that worry us about the future of our world. Yet after this experience I feel positive and optimistic about our future because inherently human beings are wonderful.
  5. We first win or lose all battles in our mind. These four days were difficult for me but not once did I think that I would not get through it. The moment I heard the doctors say that this disease was curable, I knew that if there was even a small chance of surviving it, I would get it. Never underestimate the power of a positive mindset.