My Lord knows a way through the wilderness
All I have to do is to follow x 2
Strength for today, is mine all the way
And all that I need for to-mo-rrow
My Lord knows a way through the wilderness
All I have to do is to follow
Dad has lived and is living a full life. He is now 74 years old (he counts his age as 75 as he starts counting from conception).
The last 4 months, however, have seen Dad and Mum walking further down paths which are new to all of us.
It started in mid February in Thane. Dad and Mum came down to be with us in Thane for a month. They wanted to be with us for Enoch's birthday in February, have Dad's follow-up visit with his oncologist at Bethany Hospital in March, and also help us pack up our house before our planned shift to Lalitpur in April.
Since January this year, I had started doing 2 weeks at a time in Lalitpur to try and start up our work with the community health and development programme of the Harriet Benson Memorial Hospital - and prepare the ground for our family to move. We were also trying to get legal guardianship for Yohan (another story - to be told soon) and I was also hoping to write Dad and Mum's story as well.
When Dad came to Thane, he said that he was having trouble eating - and that he has experienced a certain amount of discomfort in his stomach. Having undergone a Whipple's procedure as a life-saving surgery a year before, we know that Dad's digestion is just never going to be the same again.
I was in Lalitpur when Dad when for his initial blood tests in the run-up to meet his oncologist. Sheba called me up and said that Dad's CA tumour markers were high, and that the oncologist wanted to have a abdominal and thoracic CT scan done.
A few days later, another night conversation on the phone. I was pacing outside on a Lalitpur night while Sheba told me the result of the CT scan. The results were not good. After Dad had taken his chemotherapy last year, the CT scan had shown no visible nodes. Now nodes were seen. Some in the lungs. A possible node in the bone. Not happy news at all. Dad's elevated cancer markers had given the clue - the CT scan confirmed it. The cancer was back and had spread.
When I got back to Thane, we went to meet with the oncologist. He said that the cancer was back, but that Dad was 'asymptomatic.' Further IV chemotherapy or radio-therapy would not be much use now - and there was no focal mass to cut out with surgery. Wait and see was what the oncologist said. He gave an new daily pill oral chemotherapy with few side effects which has worked for some people. And told Dad to contact him if symptoms appeared. We sent Mum and Dad off to meet their dear colleagues from OM years in Bangalore, and then they went back to Mussoorie with the future very open.
The first few weeks of Mum and Dad in Mussoorie were quiet. And then we started hearing that Dad was not sleeping well. Not eating well. Us Thane Eichers were going through an egg-beater of a time as we tried to work with the system to get Yohan's papers so that he could come with us to Lalitpur - plus were packing away and trying to tie up 13 years of living in Thane as a family. And so all we could do was pray.
Fast forward to early May. We have moved to Lalitpur - minus Yohan who the authorities in their 'wisdom' have not given permission to go with us. I am moving up and down between Lalitpur and Thane to try and move things forward (more on this nightmare later). And then we find that due to some technicalities Asha was not getting admission at the local school for her 10th standard. Ay-yay-yo! Rumba kashtam!
A ray of light emerges when the amazing Principal of the Wynberg Allen School goes out of his way and allows Asha to be admitted mid-term into WAS! On Thursday we get an SMS from him telling us to come on up to Mussoorie. Friday evening we are on the train to Delhi. Night taxi to Mussoorie and we are at his office on Saturday morning. Forms are filled up and a delightful interview in his office later, we are granted admission. We get the long-list of items for Asha's boarding and so scurried around on Saturday evening and Sunday afternoon. And then on Monday morning, we took our first-born and said good-bye as she stepped into a new school and a new world ... and found ourselves as abruptly as the parents of a boarder!
During our time in Mussoorie, we had the sadness of seeing that Dad was just not doing well. He was in pain at nights and was eating a tiny amount at each meal. Dad had regularly measured his weight - and had lost 10 kgs in the past 2 months. It was painful to see. With Asha in boarding, we decided that we had to take Dad to see an oncologist - and so got an appointment at a large private hospital in Dehra Dun for the next day.
Sheba, Mum and myself took Dad down the hill the next day, with Manoj driving us in a jeep. The hospital was plush, and Dad perked up a bit, as it reminded us a bit of the spick and span of Bethany Hospital in Thane. Dad was all smiles and friendships with the folks around him - but at lunch in the cafeteria, we could see him tiring as he bent over a table and slept a bit. The oncologist asked for the normally battery of tests to be done - which we did - including another CT of the abdomen and chest. He said that this was most likely a relapse and suggested starting a 2nd line chemo-therapy the next day. He said that we should try for 3 months and see if it works.
Sheba and I had our tickets booked to go back to Lalitpur and so we as a small family decided to go forward with starting the first dose the next morning. We left Mum and Dad with dear friends of theirs in Dehra Dun and drove back with Manoj to Enoch who was alone in Shanti Kunj for the day.
The next morning we met Mum and Dad at the plush hospital. We had our cash in hand and Dad was hooked up for his day treatment on the new course of chemo. By 3 PM he was back out of his chemo and we packed them off back to Mussoorie while Sheba and I headed for the railway station. Just before we left, we pocketed the final report of the CT scan.
It did not make easy reading. The report said that the cancer had spread to the lungs and there was a small amount of fluid gathering outside Dad's right lung (pleural effusion). There was evidence of spread into the liver. And there is a mass in the place at the pancreas where the operation was done last year.
Back in Lalitpur we emailed this report to some of our friends - including our dear Tan Tzu Jen. Jen was with me at Taylor and we spent a memorable summer living together while he did research on rat hearts and I counted species progression in fields for a weed-seed ecology study. Jen came and visited me when I was at Nav Jeevan Hospital in Bihar before marriage (both of ours) while he was a med student. Today Jen is a surgeon and missionary doctor who divides his time between the River Kwai Hospital in Thailand and his native Singapore.
Jen's response was quick and very sobering. Dad's cancer has metastasized. The chemotherapy that the oncologist had prescribed was cutting edge and for cancer treatments has a pretty good outcome (about 48% of patients experience tumour shrinking). But, even if it 'works' we are expecting something like 2 months on a 6 month survival after metastasis from pancreatic cancers. Jen suggested looking into palliation instead. Over the week we got similar responses from Dr. Kenny David at Vellore and Dr. Stephen Alfred from Bethany and Dr. Ann Thyle.
And so less than 10 days later, Sheba and I were up in Mussoorie to talk to Dad and Mum. We prayed and laid it out to them. Dad took the news as positively as he always has done. The first dose of chemo had not been kind to him. His blood counts were down and he was just not feeling well. We explained that palliative care is the care we give when its unlikely that further curative care will really work. We talked about 'adding LIFE to days' (palliative care) instead of 'adding days to life' (the goal of curative care). We talked about upping Dad's pain medications so that he gets sleep and night and hopefully gets back his appetite. We talked about the end of life and discussed about where we wanted to be. Big, big topics to discuss. Our point was to begin the conversation. We came away with the peace that passes understanding. Mum and Dad agreed that we would not pursue further chemo-therapy, but would continue working to make things as comfortable as possible for Dad and work on symptomatic treatment as challenges come. It was back to Lalitpur for Sheba and myself at the end of the weekend - with Enoch staying on as our representative.
Last week Sheba had the privilege of taking a foundational course in Palliative Care which was hosted at our HBM Hospital in Lalitpur. And who should be there but Dr. Ann Thyle herself - who helped set up the palliative care programme at HBM Hospital and who has been spearheading the palliative care work across EHA and beyond! Sheba and I were blessed to have a wonderful evening visit by her which helped us gear up for the next step in Dad's journey.
I was due to come up this weekend to pick up Asha as she has a 2 week summer hols break - and bring back our Mussoorie-holidaying Enoch back to Lalitpur. Sheba decided that we should both come and help Mum and Dad take the next step with Dad's pain medication. Thanks to Dr. Ann, we are now in touch with a palliation doctor at a hospital in Dehra Dun. Dad has been waking up every night and medicating to control the pain. A certain amount of relief is there - but the pain continues in the back ground. We are hoping to achieve nil pain. Sheba and I talked to Dad and Mum on Saturday and then again on Sunday. We agreed that the current drugs which are low-level opoid-derivatives are not doing the job, and so we are stepping into the next step, which is a morphine-based therapy.
Yesterday we went down to meet Dr. Mayank Gupta. His office is in the bowels of a large charitable hospital in Dehra Dun. We meet him at the Pain clinic. He is friendly and clearly passionate about helping folks with cancer. A huge difference from the previous experience in the plush hospital. Dad is very much at ease with Dr. Mayank. He agrees to start on morphine. We had come prepared for 2 days of admission while the dose is titrated, but Dr. Mayank is happy to send Dad home and have Sheba monitor his doses. The drug itself is recorded in the morphine register. Knowing the street value for stuff that is abused, it is almost comical to see that a strip of 10 costs Rs. 55 only.
And so last night we found ourselves back in Mussoorie. Dad slept most of yesterday night and we have cut down on the numbers of pills he has to pop each day. He is in good spirits and we take every day as a blessing from the Lord.
Though not on our agenda - we do have a mini holiday on our hands as we are not down in Dehra Dun at a hospital with Dad. The cool mist shrouds the oaks. Shanti Kunj continues to be as beautiful as ever. There are warbling birds outside in the moss-covered trees. A cup of coffee is about to be rustled up and Enoch has gone to Prakash's store in search of cinnamon buns. Scratch that - Asha and I are about to go and buy besan - which Sheba will use to make pakoras (and we will get buns too!).
What will tomorrow hold? We just don't know. But we do know who holds tomorrow. Sheba, Asha, Enoch and I are set to head back to Lalitpur day after tomorrow. One of us will be bringing Asha back in 10 days. Stefan is flying in to spend some time with Dad in early July. We are looking to our Lord to take us through. Cancer is something that we have not experienced as a family first hand till now. We are all learning and deeply appreciate the love and concern of so many for us.