The sun is new each day.
It was August 2012, and based on the emergence of new bony lesions, it was clear that Arun's disease had progressed despite ADT. Chemotherapy was the new line of treatment proposed. Arun had visited his treating oncologist and they had discussed the risks and benefits of chemotherapy. Out of the range of chemotherapeutic drugs, Docetaxel was selected. It is a first-line drug, used in breast, lung and prostate cancers. It had the best chance of controlling the cancer. Chemotherapy prevents the cancer cells from multiplying by blocking the cancer at particular points in their cell cycle. It manages to contain the disease by preventing cell division.
The date for the start of Arun's chemotherapy was fixed for August 26. This time, we were required to admit him to the hospital for a couple of hours, for the duration of each cycle. So far, we had visited the oncologist in the Out Patient Department (OPD), since most of the treatment had been oral medication, requiring no hospital admission. We opted for day care over a private room for the therapy. The nursing station had a clear view of all its patients and the nurses were prompt to attend to all calls or emergencies. The disadvantage was sharing the space with others. Arun had felt that for a 3-4 hour treatment, this really did not matter.
I had had six cycles of Docetaxel for my cancer, so had prepared Arun according to my experience for his treatment. I gave him a mild purgative and a sleeping pill the night before his chemotherapy. He had an early breakfast of cereal and tea and we left the house by eight. I took an egg and cheese sandwich with some green tea in case he got hungry. I Was sure he would not eat the hospital food. It was almost an hour-long drive to the hospital, even that early in the morning.
Day care was rather like an assembly line, with patients on beds or chairs, either lying flat or semi-reclined, side by side, each being fed some toxic medication intravenously. It was Arun's first cycle of chemotherapy, and I was apprehensive about leaving him alone, even for for the admission formalities. But I soon realized, and this was confirmed over time, that for the Malayali nurses he was a VIP (Very Important Person), being from Kerala himself, and I never needed to worry. The nurses identified strongly with him, and addressed him as 'uncle'. Cultural identification helped us in this way.
Arun already had the results of the baseline investigations that were mandatory for the start of each cycle of chemotherapy. As a result, there was no delay in commencing his treatment. All the tests had been in the normal range, barring the rising PSA. The premedication started by ten-it was a cocktail of drugs given to ensure a smooth run of chemotherapy. The Docetaxel drip was started at eleven, and the initial fifteen minutes went slow, to test for any susceptibility or untoward reaction to the medicine. As Arun was comfortable, the speed of medication was then doubled.Sub-Standard Hospital Food
The usual practice after admission is to address the dietary needs of the patient. I ordered the hospital food just to see what was on offer. Arun was clear he only wanted the sandwich that I had made. The hospital food was unimaginative, all the food items looked similar and not appetizing. Over time I realized that the same fare was out at each admission, perhaps for both lunch and dinner. I could see how such mediocre food could be a could be a problem, taste is altered, or in case the patient was required to stay overnight. There was not even a slice of lemon to make the food more palatable.
By 2 pm all was done and we left the hospital for home. The first chemotherapy had gone well. Complications over the next two days were minimal-Arun had a bitter taste in his mouth, minimal nausea, watering from the eyes, constipation and some sleeplessness. Frequent mouth washing helped deal with the first two complications, and a mild purgative over the next two days took care of the constipation. A sleeping pill at night helped him sleep. His appetite returned in a couple of days, and the bone marrow stimulant that was injected ensured normal counts by the end of a week. He had continued to work unhindered during this period.
Interestingly, the bitterness he experienced post- chemotherapy was compounded by the type of food served. He didn't like vegetables and the sight of these always put him off. On the other hand, “kabab roti always went down well. I soon realized the need to discuss the daily menu with him before ordering food.
If music be the food of love, play on, give me excess of it. -Shakespeare, Twelfth Night
The senses affected most by chemotherapy were taste, smell and, in a way, vision. The constant watering from the eyes interfered with reading over a sustained period of time. As the other senses were intact and heightened to some extent, hearing in particular, I used music to calm his nerves. Aristotle (273-323 BC) wrote about the healing power of music, which we now know helps in pain and chronic depression.74 Arun enjoyed music and it was effective in distracting him and elevating his mood after chemotherapy.
Even repetitive sounds like the chirping of birds, bubbling of a stream, crackling of a fire and lashing of waves along the shores are all calming. This is nature's soothing symphony. The chirping of birds is common where we live; letting in these sounds in the morning brought the body closer to nature, was pacifying, and promoted tranquillity and serenity. Arun said, To wake up to bird sounds gives me an enormous sense of peace, it is the sound of being at home.
His VIP status in the hospital meant that Arun could slowly make his way to the ward unaccompanied, while I completed the admission formalities before each chemotherapy session. First, I had to collect the admission slip from the oncology OPD on the first floor, then return to the ground floor to pay the treatment advance, and finally proceed to the admissions counter for bed allotment before getting to day care on the fourth floor for the chemotherapy to start. By the time I reached day care, the most proficient phlebotomist, at times coming from the adjacent ward, would have started Arun's drip. He was always allotted bed number 12, the cubicle that was right in front of the nursing station.
Arun's smattering of Malayalam worked like magic, always getting him their full attention. He was one of them and they looked after their own. Us Indians are very parochial but I am not complaining. Arun got special treatment without having to cajole the hospital authorities or a senior doctor. The nurses were very good to the other patients, too. They were sensitive and compassionate, yet we always managed to get the largest cubicle, flooded with natural light, and in full view of the nursing station. Bed number 12 even overlooked a park.Future Medication Options
Once Arun went on to chemotherapy it was apparent to me that we needed to know all the future options available to us. Surgery, or even standard radiation therapy, both were not feasible options for him. At his stage of the disease, it was important to keep abreast of all the newer developments in cancer research, so that once the newer options became available after FDA approval, we could access them. Treatment in oncology is constantly changing, as knowledge improves—primarily to enhance the effectiveness of the drugs on the cancer cells, but also to reduce the side-effects. To ensure that no stone was left unturned in his treatment, I researched the various new treatment modalities that were being currently developed. At that time, there was a great deal of excitement among medical researchers regarding two new drug trials for prostate cancer.
In the West, prostate cancer is one of the most common malignancies in men over the age of sixty. Hence, researchers are on the constant lookout for a new drug, or a combination of drugs. Most of the research is driven by pharmaceutical companies who are hungry to patent and develop newer medications. The availability of these drugs, even after FDA approval, may be delayed in India for many reasons. One of the newer drugs I found was radioactive, and would have required the Atomic Energy Regulatory Board's approval not only for the use of the drug but also for the hospital where it could be administered. Such approvals were unlikely to be granted soon enough to benefit Arun, if at all. If we were to consider such a drug for treatment, we would have to travel to the West.
I found that Phase III trials (Phases I and II look at the safety of a drug and its side-effects, while in Phase III clinical trials compare the new drug with the currently available treatments) were being completed for both Abiraterone and Alpharadin at the time. Abiraterone blocks the synthesis of testosterone in all tissues of the body including the tumour (ADT), and could thereby contain the disease by effectively starving the growth and spread of prostate cancer. It was an oral medication and would be available in India soon. Alpharadin (Ra-223), on the other hand, was a type of internal radiotherapy using a radioisotope that worked by delivering minute, highly-charged and targeted doses of damaging radiation to the secondary tumour in the bone.
Radium being similar to calcium (giving strength to the bone), homes in on newly formed bone, thereby delivering radiation to the target. Ra-223 delivers high-energy radiation to small regions, localizing in areas of new bone formation (osteoblastic), as opposed to normal areas of the bone. The bone lesions in prostate cancer are generally osteoblastic. The collateral damage to the normal bone marrow is minimal because the particles have a small range and do not reach the normal bone. This was the drug which required the approval of the Atomic Energy Regulatory Board. Both these newer drugs seemed promising.
We discussed these possibilities with his treating oncologist, who was aware of them but sounded unsure as to how we could arrange for them in India. Alpharadin was his first preference for the next alternative treatment after completing six cycles of chemotherapy.
Arun's disease was mainly in the bones with no visceral involvement (i.e. no other organs were involved), therefore the oncologist's choice was understandable. That evening, after completing the third cycle of chemotherapy, Arun emailed Paul Mathews, who responded promptly and promised that he would get back to him with all the information within the week.
The six cycles of chemotherapy would be completed by the middle of December. So far, things had gone well. Arun had not suffered too much toxicity, but still, a break from chemotherapy was most welcome. Within the Indian scenario, chemotherapy was the only treatment available to him. It gave his body a chance to 'rejuvenate' and regain itself for further therapy in the future.
True to his word, we received a swift response from Paul His suggestion was to get on to a program on Alpharadin at the Dana Farher Cancer Institute for six cycles, starting in the second week of January. It was appealing and would work perfectly for us. We spoke to Paul and Reji about this proposal and it appeared doable. We worked out the logistics for Arun's stay in Boston at the time of treatment. lle could either stay in the US for the entire duration, or return to India after every cycle. Either Adil or I would accompany him during each of the cycles of therapy.
Arun was familiar with Boston--he had spent a year in Cambridge on a Neiman fellowship for journalism at Harvard in 1977. He had subsequently visited the city a number of times while working for The World Paper. The idea of spending six months on familiar territory in the US appealed to him. Now, we just had to complete all the formalities. Arun had a valid visa, but I needed to get one. Since we were only in the middle of October, time was on our side.
There was very little red tape in our communications with the Dana Farber Cancer Institute. Most of the formalities were completed online. Arun filled the forms and sent off all the latest investigations-including scans of the x-rays, ultrasound and MRI. The tissue blocks and histopathology Slides were sent by courier-they would confirm of Arun's suitability within the next ten days and then we could make the necessary payments. All this was a complete diversion from the treatment Arun was receiving. The fourth cycle of chemotherapy went like a dream the side effects were minimal, though he suffered more than the usual fatigue. We dealt with the fatigue by adding a protein drink to crease his protein intake. He managed to ear his three heals adequately with a snack at tea-time.
Just before the fifth cycle of chemotherapy, we got confirmation from the Dana Farber Cancer Institute for Alpharadin, starting January 16. Reji had offered the use of his home as a base during the treatment. I was hugely relieved that Arun would get a break from chemotherapy and try a drug that was so full of promise. We decided to figure our the logistics of travelling after the first appointment with the doctor and on receiving the first dose of this new drug.
Arun had continued to work and travel during his treatment, making several trips to Lucknow, Bangalore and Bombay. He considered quitting his job before leaving for Boston, but his organization would hear nothing of it and returned his resignation letter. He was told to take a leave of absence, and make a call on resigning only after returning from the US, after the completion of his treatment there. This was fine by him. As long as everything was transparent, there was no question of letting anyone down.
By the middle of December he had completed the last cycle of Docetaxel without much problem. Apparently, the progression of the disease had been halted. Maintaining the dietary requirements during chemotherapy had been a challenge, particularly for the first 4-5 days after the treatment. Steps were taken to overcome these by providing supplements to deal with the possible deficiencies from loss of appetite and inability to eat. Most importantly, it was crucial to maintain a stable weight for a constant dose of chemotherapy.