Saturday, December 31, 2005
Today is the last day of a year that has changed my life forever. It’s odd to think of what sort of a person I was when say, this year started to what I am today. It’s not just the new Yul Brenner look, or the steroid moon face - I know that I look at life differently now. I think the process of realizing that life can be thrown from being so predictable and comfortable to uncertain and at times frightening is a humbling experience. When 2005 came along, I was in control – (or so I thought) I was calculating how long I would take to finish our post graduations, which mutual funds Anne and I would invest in every month so we would have enough to buy maybe a car/ new computer during the next 2 years, what will we will need to equip ourselves as we went to mission hospital settings. There was a certainty in the planning. Not that I do not plan now too – but the fact is that I, who plan has changed.
What does 2006 hold? Should I dare to look into the crystal ball of my mind and conjure up what to hope for in the new year. Or will I only be reminded that ours is to live the journey in faith and that things will work out in the greatness of Gods plan?
What do I look forward to in the new year – being cured from the lymphoma, a baby of my own, getting back to clinical surgery and publishing some research while waiting, Tripti getting married, Anne into postgraduation, my new found friends all over the world with similar cancer getting better, there is so much to look towards, so much to plan and worry myself about. That is if I decided that my worrying about it would change the course of things that are already planned. I guess that’s where faith and hope come in and even though it is natural to worry about the future, I know that 2006 is going to be just perfect. It’s in Gods hands and safe there.
2005 has changed me in many ways and I am grateful for that – As I watched the sunrise today I could feel the hope that God gives us through different ways – today it was in the rays peeping through the trees and I know things are gonna be alright.
“And I think it's gonna be alright
Yeah, the worst is over now
The mornin' sun is shinin' like a red rubber ball” Simon & Garfunkle
Friday, December 30, 2005
For a post Chemo day, I woke up surprisingly early. The night post chemo 9 passed off well. Occasional waves of nausea and burning in the tummy, but nothing too serious. I was able to eat my normal breakfast – so I guess the rest of the day will be peaceful.
Joel Koshy, studied with me till the second grade in the small school in the campus we stay in. His parents worked in CMC then and he left with them to the Gulf. He heard I wasn’t well, and since was in India for his brothers wedding popped in to spend the morning with me! It was great catching up on our lives after all these years. It’s funny about how much we remember of our lives from so long ago. He stayed on for lunch and is heading out to Chennai to fly back to the USA where he is doing his PHD in computers. Life…. Incredible. The picture is of us post lunch!
The numbness in my fingers is growing to become borderline irritating. Every sensation is a burning sort of feeling and I can’t distinguish hot from pain. I hope this clears as soon as Chemo is over.
Today the next few exciting things I have done was buy a few shares -(very few eh!) and install a wifi card on my rickety old laptop. The Chap at the shares broker place knows I have a lymphoma and was initially really upset to know (we are the same age, just a few days apart actually). His first reaction was why are you bothering to continue to make investments just relax and get better. I resent that thought. That would mean I have given up on living life just as I would have, to cut back on a quality of life just because of a potentially life threatening illness -In many ways he would be asking me to put my life on hold. Sorry boss, there is no 'hold' on my life.. It goes on...my energy source is outta this world!
Thursday, December 29, 2005
Today’s post I write most of the text sitting in my room in MTS 2 ward, room 226B. The patient I share the room with will be going in for a neurological angio in a few moments.
My left hand is receiving the Retuximab (5Hrs) and we should be done by about 6 pm after Adriamycin and Cyclosphosphamide (2 Hrs) this evening, after which we drive home.
It’s been a wonderful morning, I checked into the ward about 8:30 am, checked my weight and height. Anne is gently pulling my leg about the extra kilo’s the weighing machine shows (those steroids again!). Anne went to buy the drugs in the pharmacy and I then met up with my friend Mr S. in the ward, who received his first CHOP chemo yesterday, he is doing OK. Not slept too well, but not puking as much as I did on my first chemo. His son will be leaving back to Calcutta to stay with his grandparents and attend school. Mr S and I were comparing notes on first chemo’s. Ha!Ha! Like my friend in Singapore Liang Ying (with Hodgkins) writes about our new friendships made, ‘misery loves company’ – though there is no misery only talk of a healing God, medicines and tiny miracles that we encounter every day.
I was worried about them finding a vein today, but the nurses found a nice one behind my little finger and chemo is flowing fine, no pain. I had given the left hand a rest for the last 3 weeks because of the thrombosis, but now my right hand is aching so it had to be left hand this week.
“When I was a child I caught a fleeting glimpse, out of the corner of my eye, I turned to look, but it was gone, the child has grown and the dream is gone, There is no pain, you are receding,… my hands feel just like two balloons (?was he getting Vincristine),…. I have become comfortably numb, who cares – for just a little pinprick, there wil be no more.. ahhhh! – Comfortably numb, Pink Floyd (Floyd has been judged best band of all times according to an article in today’s edition of the Hindu. Good for them!)
I watched a lovely movie today during the chemo and would recommend it to anyone interested. CRY FREEDOM - its got Kevin Kline and Denzel Washington directed by Richard Attenborough about the life of Stephen Biko, a black activist who lived the South African Apartheid movement and his friendship with a white man Donald Woods, a liberal newspaper editor. The movie touches on friendship and the right for one man to claim to stand equal to another irrespective of skin colour. How much in life we can take for granted. I look over and watch Anne sleeping on my hospital bed with her OG notes fallen beside her, the chicken Appa cooked me at home for lunch and just sent over and think how we can so easily take things and people for granted. Hope I never do that.
10PM – all is well, I am back home, Dr. Sitaram the head of General Surgery and one man who I really admire, came over to visit. The support system we enjoy here is really great.
Wednesday, December 28, 2005
(The view from my terrace in the morning)
Today was a busy morning - Wednesday is the day I have to check all my blood counts and see if I am ready to get the next Chemo for Thursday. Tomorrow is chemo 9 and since it's with Rituximab will need a day care admission. Anne poked me as soon as I woke up, one tube for blood counts, hemoglobin and platelets, the second for liver functions (albumin and enzymes) and creatinine (kidney function) and the third for blood sugar. Blood counts can fall because chemotherapy also affects normal bone marrow and slows it from making the normal red and white cells, liver and kidney function can go up if the chemotherapy has damaged them or not drinking enough fluids to wash out toxins and blood sugar can go up because of the steroid pills.
I drove into hospital with Anne, Amma and Tripti and then made my first stop to encourage the man I had met outside the chemo room a few weeks ago. His diagnosis has been confirmed and he starts Chemo today. He is admitted in the ward I will probably be admitted in tomorrow. I spent a while with him and his family – he has a sweet young son ? maybe 10 yrs old. His Non Hodgkins lymphoma is years after he has had a renal transplant and a very similar type to mine. I guess the words of support will help him through today. It’s not easy in an alien place and getting toxic stuff.
Next stop was the labs, gave in all my tubes to the different lab staff. Funny how 4 months ago I was handing in tubes of other patients and now I stand and watch them check the hospital number and see if there is enough blood in my own tubes!
Great news on the research front. My department has appointed a technician to run the anal manometry lab. Reshma is a graduate of biochemistry and will now be the technician of the manometry lab. This is a big step for us and I spent a little of my morning talking to her and giving her an idea of what her job entails. Nice enthusiastic girl, but I have to remember that she has no medical background and go easy.
Today Lizzie ammama and Appu acchachan go back to Singapore with ammachi (Grandmother). It was great having them here, long chats and their loving support was really a great encouragement. I have a few snaps of our time here and have loaded it on her thumb drive to view when she gets back!
Tuesday, December 27, 2005
Today I will spend a moment to reflect on the value and strength I have drawn from my friendships. It’s very difficult to classify and define where different individuals fit in on the canvas of my life. Many of my closest friends are the furthest away in terms of distance. There are others, though just people I considered as nice, whose love and just being there for me has brought them closer to me through this time.
Anne and I sent off an e-mail within a week of my diagnosis to my friends at College and school. We also contacted the few people closest to us. We were as blunt as possible. We had nothing to hide, but we asked them all to pray for us – and that was what we needed. I had only let the same group know a month before that we were going to have a baby – so you can imagine them getting e-mails that read – “hey guys, goanna have a baby!”, then in 4 weeks “ hey guys, got a lymphoma!”. It was just incredible the way they responded. An entire group came in from Bangalore, e-mails from around the world just saying that they care, offers to help, calls of support from those I knew though even so briefly. There was silence too, from some of the loudest people – but when those people did speak to me, they were genuine in saying that they had no words to offer when they knew. I believe them, and I know that came from care – what use are empty words spoken in just a sense of duty to finish off the job?
I am a person who can not think of what I would have said if the roles were reversed. This entire episode has taught me so much. In retrospect I can not suggest which way one should react if a loved one or friend needs your support. But when the care is in your heart it shows in whatever way you choose however simple. O boy, does it show. I’ll give you examples, we have received chocolates, home made squash because I need fluids, photocopied daily devotionals that someone thought helped them, food books, a bike ride, an offer to store our babies umbilical cord stem cells, calls from friends with cheer and offers to come spend time, books, e-mails, bible promises (very useful), cards and the list is just endless… but each offer, word and deed done in such love. I will not mention the names of my friends here because I have too many and will not achieve the purpose of this post. But I must say that if not for the love of friends, my road to recovery would not be as half as blessed as it has been.
Monday, December 26, 2005
Today I’ll start off with the memory freshest in my mind. Dinner - It can get pretty monotonous eating home cooked food. Appa and Amma took our guests out to our best restaurant in town and I very boldly insisted I join. Dr. Alok in hemat had told me that it was OK to eat in this particular place because the food is good and he said if I did get an upset tummy I just need let him know and He’s start me on some antibiotics! It was such a treat to eat out. I really enjoyed it. Dressed up in my new Christmas T-shirt from Rajan Acchachan and Annie ammama in Singapore – I made full use of my one on-chemo meal out. (other’s on chemo in India at least, please don’t follow my example!).
Today was a lovely day – it started off cool and foggy, but the day was really pleasant. I spent a while in the garden doing some photography. I will put in some pictures later on my thoughts page. Anne left to hospital to study and Tripti went in to work today. My maid heard me wrong and made me 3 omlettes instead of 3 dosai’s for breakfast! I’ll probably die of an MI before anything else has a chance to get me.
I managed to get some clearing up done and got rid of a lot of paper that I’ve been filing in my filing cabinet (financial and old study material). It’s funny about the brain if it has even the foggiest doubt about the use of printed material decides to keep it. Anyway, today I hope I have weeded my filing cabinet well enough!
Post chemo effects are filtering in now, the Vincristine has really numbed my fingers. I kept dropping my orange peices onto my plate - realized that I am not holding them firmly enough- not getting the feedback from my fingers as before. The skin on my fingertips are peeling and starting to burn every time I wash with soap. My left arm is much better though, and I think the thrombus is dissolving out hence less pain.
But life is good and the day ends well - so well that I choose to start my post with the memory of the good meal eaten in the security of a safe restaurant. You must remember that half of India lives without that security. Today many remember those loved ones, houses and livelihoods lost to the "tsunami" - a word alien to our side of the planet, now spoken of with about as much (negative) 'reverance' as you would say 'cancer'! I go to sleep next to a beautiful (but tired) Anne in a house that more than keeps us safe. Counting your blessings is something I could do, but God hasn't given me enough fingers!!!.. P.s.. this is a snap of home from the driveway.
Sunday, December 25, 2005
Anne and I went to the service at our Church, and left at 7:45, the rest were sleepy and planning to work on the mutton. Pastor Irwin, our Presbyter had a very relevant message and spoke today of Gods perfect timing. Though Jesus was talked of in the book of Isaiah, we had to wait for Gods time till he came, and similar instances. I could not agree more, though our trials Gods perfect timing has been the encouragement that keeps reminding us that he has things under control.
Lunch was lovely – Amma’s roast lamb was delicious. I’ve put in a picture, though if you could link taste and smell into a blog link, I would have done that – just to give you a fell of what a lovely lunch we had.
The afternoon was spent with Lizzie ammama. We spent time catching up on many things and talking. We are both very happy today to hear from someone we both know, who has Hodgkins and got back in touch by an e-mail today to greet me for Christmas. He has been on Chemo and is not having such a great time.
Two students I taught Anatomy, popped over in the evening – Bichu and Gemlyn spent time chatting with them. Shikha had bought me a lovely Christmas gift, a fun book on learning Oriya (will be useful when we get to Baripada), Dr MC Mathew and Anna aunty had brought us a lovely potted plant (name and picture will feature later!).Dinner to was incredible – with Mashed potato, stir fry vege’s, ham, and tomato soup. We retire to bed, fed well both body and soul. As tiny Tim says “God bless us everyone”. I hope everyone had a Christmas as full of Joy as I did.
Saturday, December 24, 2005
Christmas and company- Last year Anne’s parents and brother Cherry spent Christmas with us here. It was a time of rest, catching up each other and enjoying the fellowship of two families that had fairly recently come together. This year Amma’s sister Lizzie ammama will join us with her husband Appu acchachan. They live in Singapore and are coming tonight.
Christmas and the tummy – I love mutton and Appa went early this morning and selected 2 beautiful legs of mutton for a roast tomorrow! I don’t think any chemo blog talks as much about food as mine does!
Christmas and Jesus – Peace and Joy. Now that’s what this Christmas practically is. Not just tomorrow or today. Through this experience of the last 2 months we have experienced a Peace that can only be divine and Joy that can only come from a baby that came to give all he had. It’s been Christmas every day in Vellore and I hope it is for everyone else too. And the great thing is it’s something anyone can have. Peace and Joy from a baby. Now isn’t that something exciting?
This picture is from my college days - Mens hostel at Christmas.
10PM - Dr. Benjamin, my boss called the department and some others to his home for a Christmas meal. It was a really great time, we had a little firework show and sat around and spent time just enjoying the ambience of good food and music and a lovely home. Here is a part of the team I worked with and Sir's wife - Dr Anuradha (just behind me)
Friday, December 23, 2005
Last night two good friends and classmates from college – Abhilash and Lijo came home for a visit. Both are doing their General Medicine postgrad here in CMC. They actually landed up at home when Anne and I had gone for our walk – and came searching campus in Lijo’s Santro Xing, picked us up and brought us back home! Abhilash had just been home and was showing us photo’s of Anand’s wedding that we’d missed (sob!). He was actually on call, but handed over his bleep and came to see us when Lijo said he was headed here.
It was a nice time, they stayed for dinner and we had a load of fun. Abhi is the type who can put away any amount of food and never gets fat. He does have a small tummy now though!
The children on the campus were supposed to come caroling last night – I made some fresh popcorn and Amma fried some fryums, but they never landed up at our home!? Anyway that means I have a lot to snack on today.
I have been listening to some new music - Dream theatre. It’s quite good. A bit like a similar group Anand introduced me to called Nightwish.
I was really tired last night and crashed out early. By Gods grace yesterday’s chemotherapy only made me tired. No nausea or any other side effects. I am trying to keep drinking lots of fluids, it's not easy when it's cold and fed up of all the types of juice thats around. Anne and Tripti are hard at work.
Thursday, December 22, 2005
I’ve titled with words of Paul & Linda McCartney, sung more fondly in my mind by Axl Rose. I’ll live and my tumors gonna die!
Today was Chemo 8. Tripti and I went to survey the chemo room and the OPD setup of the hematology department at 8 am. The doctors usually come at 9:30am after a journal club, and since today was Vincristine and Bleomycin I wasn’t in any hurry to get chemo – it would last 15- 25 min tops and I would be ready to go soon after.
I had prepared Christmas cards for the chemo sisters in OPD and those in my ward – so I went to give those off. I met the Chemo registrar Dr. Kannan at about 10 am, who checked my counts and other tests, examined me and took me over to meet Dr. Mammen Chandy. The pain in my left forearm has been getting worse and so Dr. Mammen suggested I get the venous system checked out by an ultrasound Doppler – if there were blood clots near the veins of my chest I may need heparin. It’s an injection that decreases the ease with which blood clots and can help dissolve clots a bit too. Yvette, a registrar in radiology, who had worked with me in Surgery a few months ago obliged to do my scan at the drop of a hat (me - grateful!). By Gods grace the veins near the tumour were patent and soft, only the ones of my forearm were blocked. That’s good news, because it translates to no need for the painful heparin injections.
I met Dr. Mammen with the results and took a quick snap so you all know what he looks like. Dr. Alok is missing, and so are many of the others of the team- the thing is, this unit works as a team and you feel like more than just a ‘patient’. I met the Bengli man from my last chemo visit again today (with a similar diagnosis as I had). He said that his doctor here had told him he would be fine just like “our Tarun”. Don’t I feel special?
The chemo as such was uneventful and I have eaten a good lunch. I hope to be able to make a walk out in the campus tonight to give a few more Christmas cards.
Wednesday, December 21, 2005
My thesis patient was waiting for me at the anal manometry room. He was visibly distraught to hear of my diagnosis – we had become well acquainted when he came 3 months earlier for his fistula surgery, he had been operated 3 times in Bengal and had a recurrence after a few months each time. He holds my boss Dr. Benjamin at a God like status for curing him. On the e-mail with Pastor Carlos ( A Pastor's Cancer blog), we were commenting on the cultural differences of doctor patient dynamics - thats a common Indian thing that we mentally push our healers to God like status. Anne performed the test for me, and after that we gave my blood work into the labs to make sure my counts are all right for tomorrows Chemo.
Anne takes my blood every time for these tests – I wish everyone had such a great phlebotomist (it takes half the dread out of the poke when the person knows what they are doing and does it well!). The picure here is her doing my chest dressing before Chemo with Appa watching! I wanted to look lovingly at her dressing me but ended up looking constipated!
The Cochrane colorectal group have accepted my topic. Hurray! My research is on its way – I may have a paper published at the end of my break to show for all my scars!
Tuesday, December 20, 2005
I managed to get some work done last night. I sat in the library with Anne and read a bit from my Surgery text books. It’s a nice feel to study in the library here in College. It was my haunt as a student (only pre-exams though). The librarians remember us from our college days and they have been keeping me in their prayers. Every time I go in they ask how I am doing and are really nice. My friend Abhilash used to sit outside the Lib and read his books spawled over my bike - he was there to watch the girls though! - He's now a MD Medicine resident. The picture here is a group of us who went to BBC - Bagayam biriyani centre for lunch.
Back then as a student in study holidays Anne and I aimed to reach the Lib at 8 AM when it opened – I would invariably be late and charge in at 8:30 on my bike (the Librarian would give me a ‘late again?’ look) , smile, sit sheepishly next to Anne- study for ten minutes then excuse myself to go eat breakfast! Hopeless!! God knows how I made I through Med school. Anne is one of those sit now – never get off your butt type of study types. I am totally opposite in that way. Heck we are opposites is so many ways – but opposites attract don’t they!
Tomorrow I have my pulmonary function test at 8:30 am and a patient from my thesis follow up is here so I have to go and check him out. I am doing my surgery Thesis on rectal pressures using a manometer (Anal manometry) and since I am on chemo and sticking fingers up a rectum are not allowed –Anne is going to help me. "for better or worse" there is no doubt this is the worse! It should take half an hour –if all goes well.
Appa will come in from his meeting in Delhi late tonight – we will have to defrost him in the microwave – the temperature is 6 degrees there! Aaaagh!
Monday, December 19, 2005
To me this year has meant having Anne with me finally after she finished her Bond in Palakad. Even though we had the bond to fulfill in 2 different places, it can be a royal pain being married and living 2 states apart for nearly 2 years. So I am most grateful this year that we have finally formed a home rather than be married and live in 2 places. It has been the greatest thing to set up room (can’t really say home) as a “family man”. He! He!
Amma has had to deal with a lot of ill health with her heart and thyroid giving her trouble, as well as falling down the stairs and fracturing her ankle in October. I guess the year was one that was planned for us to be faced with extra large challenges and also see ways of being led through them too.
The year has also been one of good things - Anne and I are going to have a baby, and we have some sort of clue as to where God is leading us to work for the future.
Today on the whole has been good. I have made a few changes to the blog – placed a few links of blogs I have been compulsively checking as they are great encouragements to me. I have also placed my favorite verse on the side bar.
I plan to study a bit tonight, am waiting to see what the Cochrane collaboration will say about my topic, just hope they don’t rubbish it!
My left arm still hurts and the thrombophobe isn’t really working, and my fingers are getting blacker by the dayand losing more sensation! I’ll stick in a pic to show you what it looks like – but that’s not much use if you can’t compare it to pre chemo.
Sunday, December 18, 2005
I watched an old movie this morning - The Day of the Jackal. Was so-so. I attempted a short run outside the house, but was flat out after 150 mts. Funny what life does to you, I had the college gold in the second year for 100 mts - now I cant even jog around my own house.
My left hand hurts today - It's something I find after a few days of the Adriamycin- Cyclophosphamide combination. Some vessel or the other thromboses and the pain sometimes makes it difficult to flex my hand. I've just bought some thrombophobe ointment and put it on hope it works.
This evening was the family carol service in Chapel - I wanted us all to sing, but chickened out in the morning. Feel guilty about that now though. There were some lovely carols sung by families on the campus. My foster parents Dr Vargese and Rekha Cherian sang with their Children - It was beautiful. "Foster Parents" is a term in CMC for staff whose home is randomly assigned to become second homes for children who come from around the country to study in CMC. Anne adopted herself into their home in College and I followed! he! he! We have other foster parents too and maybe i'll talk about them more as I get along.
Dinner tonight is a pork curry and I've got a picture of Amma getting food ready while I blog.
Saturday, December 17, 2005
I got back mid morning and spent some time on the computer answering mail. Arpith is coming to dinner today and I have made some Mutton biriyani. Arpith is a year senior to me in the General Surgery Registrar rotation and is also Dr. MC and Anna Mathew’s Son. His brother Anandith, looks after my Bullet – and does a great job of it too! I have mentioned them time and again on the blog and links. Arpith was probably the first friend I told when we saw the X ray in hospitaland I was getting ready to have my CT scan. I can remember his eyes nearly popping out when I told him. He and his family have been such an incredible support to us that it’s not really something you can describe with adequete juistice on a blogspace.
Anne is working hard and Tripti was not really in a mood to study today, so she tried to teach me some anatomy -lazy me didn't listen
12 pm - Dinner was great. Arpith said the Biriyani was good (being polite of course) and we watched Motorcycle diaries. Anne decided that she'd give the books a break and joined us. A good end to a great day!
A lot of people say Arpith looks like me..... eh? I wonder why.....
Friday, December 16, 2005
I watched 'Finding Nemo' on DVD, mental note: thats something my baby should watch - i'll make myself a copy for the future!
I decided that even though I feel sick I must walk, to prevent the steroids from weakening my proximal muscles and managed 2 rounds around the campus. One with appa, who is still wheezy from his last viral attack. We spoke about a patient I had sat with outside the chemo room, waiting for chemo. He was I think diagnosed to have something like me, and I think my chat with him gave him hope - something he had not been able to get till now. I think I like that - I am hopeful about being cured, why can't I spread it around a bit.
I woke up this morning with very little nausea - I ate toasted bread and a cheese dosai. The picture alongside is a trick i've got to swallow the prednisolone (bitter steroid pills) I wrap them in a cheese doasi bit and swallow fast! Hey I may get chosen for a nobel prize for my brilliant ideas! It's funny with food and chemo - Lizzie ammama, my moms sister suggested that I may develop a mental negative conditioning to certain foods on my chemo and suggested that I eat bitter gourd and stuff I anyway dislike when I was sick. So that way I'll have bad associations with bad food. She was right in a way - I was given a chicken mince burger the day of my first chemo and I still need to retch violently when I think of it. The mind forms such strong associations that it's scary sometimes.
Anne is studying hard and we both are praying that she gets in this year. I guess it will be tough having a baby, as well as doing a post graduation in Obstetrics, but she loves the subject and thats what she wants to do. God willing I'll be back to work by the time Koby pops along - well I guess thats just long term plannig and God's showing me that it's best to leave that up to him.
Amma went for her Christmas dinner at the department and since she'd be late Anne and I put a load of washing into the machine and it started running over and flooded the kitchen. Anne's snapped me sweeping out the wet kitchen. Mental note 2 - the water knob on our washing machine gets stuck.
Thursday, December 15, 2005
Today was my Chemo 7. Out of a total of 12 chemo's 7 is just past the half way mark. During my school and college days when I played basketball for the district and in college half time tends to be when you make the assesment as to how the games going. If we were getting trashed, we'd change stratergy and maybe take man to man defence, which could be really tiring. All with the goal of winning the game what ever the odds and what ever the effort. Can a lymphoma be that different?
The CT was to decide if the chemo is working at half time - It sure is, and my hematologists are now planning what next. The Chemo today was Adriamycin and cyclophosphamide - the pukey vein burning one's. The snaps are sister Maggie getting my chemo ready and mixed up. She started a line on my right hand today because my left hand is still sore from the chemo from 2 weeks back. She's great and got my vein on the first poke.
It took 2 hours today, and I kept scaring them by wanting to take a leak every half an hour. Chemo sisters are always worried the line will slip with too much movement and the medicine will leak out and burn the hand. I'm pretty good at making the trips carefully now!
My Cochrane research meeting went of well. Dr Benjamin P, my boss is just too great - he came for the meeting at 5 in the evening after a heavy days work and was willing to correct my papers as well as spend saturday afternoons in the future just so that I have a worthwhile project to do. Dr Prathap T is in charge of the South Asian Cochrane network (SACN) in Vell0re and is a driving force behind this research. If I send the people my proposed title this week, they will hopefull OK it and I can get to work on it soon. It just goes to show that even though I have a tumour, teachers here haven't given up on th fact that I still need to do something to feel useful. And even though it's taking their time and effort these people have really made me feel special.
Wednesday, December 14, 2005
The cooking plans got shelved, and I went off to town to pay my mobile phone bill (absolutely loony system which involves standing in line for an hour to deposit a cheque). Watched as the rest of the family wolfed down grub - 'rumble, growl!', and drove to hospital alone for my scan. The scan didn't take too long, but having the line started for the contrast hurt a bit. I went over to Dr. R to have her look at my films. She's the head of radiology here and a foster mother to Anne and me. She took one look and said "your tumour is down by 50% in 40 days!" Every day we have so many reasons to be happy, grateful to God and hopeful and today was no different!
Anne is doing better today too, she had a bad gastritis yesterday probably due to her Iron medication but was up and about today. The snap alongside is one of Anne and my mom together in my hospital room.
Tuesday, December 13, 2005
And so it was - "PERFECT" As our doctor (Dr. G) did the scan I could see our babies face, it's brain, it's spine, each little finger,each toe, the heart with all it's chamber's, it's umblical cord - this little bump on Anne's tummy was now so much more - I think it's got her chin. I could only watch in awe as the probe passed up and down our baby.
Having this baby is such a miracle. Chemo may make you sterile - or so I was told, and even with artificial methods the chances of conception are complex and unnatural. We actually realized that we are going to be parents a month before I realized I had Lymphoma and looking back the perfect timing of the entire thing has never ceased to amaze us. 'Everything happens for a reason' and 'there is Gods pupose in all that happens to us' - people hide behind not saying this in the arguement that it's too cliche' - but it is remakably true.
PS - this picture isn't Koby, i had my camera in my pocket but didn't take it out (idiot)
Any way we have to get down to choosing a name - I refer to the baby as Koby (greek for baby Jacob), but have to search for something more. suggestions anyone?
Monday, December 12, 2005
Today I spent a lot of time thinking of how important it is to preserve one's dignity. My thoughts are based on three instances.
1 -the picture alonside is my grandmother who got her set of new dentures.. finally! - we had to let the last set be literally pulled out of her mouth and then hidden- she didn't want to let them go - but they were sitting badly and causing her ulcers. The dental department has been working on her new set of dentures for the last month and when they did her final trial and they fit -everyone in dental clapped! Why didn't she want to part with her false teeth even though they were causing her pain - dignity.
2- Chemo and hair - If you surf the blogs on cancer and chemo -hair falling out is something that really upsets people (maybe women more than men). I don't think it's affected me all that much, but even an old teacher of mine who had Hodgkins said that it hurt her a lot to loose her hair. Though hair falling out means that your Chemo is working (chemo acts on rapidly dividing cells)- but still it can upset you and people try wigs or false hair- dignity.
3 - I refuse to use a bed pan - When ever I'm admitted for chemo and even after my thoracotomy in the ICU, using a bedpan to pee - even if I was assured privacy was something I just could not do. That's funny - even though when you have a chest tube in your thorax and walking about in the ICU is not the best thing, or if your hand moves and the IV cannula slips when running chemo you can burn your hand - something refuses to let me be that vulnerable. - dignity.
Sick man lookin’ for the doctor’s cure
Lookin’ at his hands for the lines that were
And into every masterpiece of literature
So many roads, so much at stake
So many dead ends, I’m at the edge of the lake
Sometimes I wonder what it’s gonna take
To find dignity
Bob Dylan - Dignity
Tomorrow I see my 5 month baby on scan - today the antenatal checkup went off well, except a painful TT injection.
There is so much rain going on - I guess this state is having more than it's fair share......... "fair share" - ???
Sunday, December 11, 2005
MACOP-B. These are the acronym of the deadly stuff I'm getting to fight my lymphoma. M -Methotrexate. Yellow stuff, runs in for 4 hours and needs to be "rescued" from doing damage to normal tissue in 24 hours by folic acid. Constipates, causes ulcers all over the place and can nauseate. A -Adriamycin. Pink stuff, looks like rose water but it really burns your veins. The stuff causes such pain in your vessels that they just thrombose and blacken out. My fingers look like I deal with coal- not cool! C - cyclophosphamide. This is one of the scary ones. It can cause bloody urine if I dont piss frequently enough, hemorrhagic cyctitis is the medical term, and with the Adriamycin causes me horrible nausea. If you are on this drug drink fluids - easier said than done. 4 -5 liters is the reccomended fluids a day. O - Oncovin or Vincristine is a really quick drug to get, but makes your finger tips go numb. Scary because I'm repeatedly bruising them without realizing. P- Prednisolone. It's such a bitter pill, I am growing to hate it. It's a steroid and hence I've started to put on weight on my tummy and cheeks. It can cause gastritis and does so especially after my methotrexate days. B - Bleomycin can cause some lung damage, but this hasn't given me too much trouble yet.
Dr. Mammen has added a drug called Rituximab to the entire schedule - I get it week 3,6,9 and 12 it's still experimental in my type of lymphoma, but It's results on similar tumour are good and if he thinks it will help I believe him. Ritux can have have complications at the time of infusion, but if the first dose is tolerated then there isn't any problems with the next. So thats all I have to say about that ( forest gump style)
Carol rounds were lovely last night - the kids came at about 12 midnight and sang and sang for us. The hot soup and Date fudge was much appreciated - it was pretty cold though.
Amma had a choice too for the carollers- "Mary's boy child" - hey that's me! he ! he!
Saturday, December 10, 2005
and the job of sitting on the jon is not something I can write publicly about -lets just say it feels like passing glass. The Vincristine has burnt my fingers and I cant feel my fingertips. But the upside is I havnt puked this time! :)
The medical students are going to come tonight for their carol rounds. It's a fun night for them, and we are all excited. My mom has been in the kitchen all afternoon preparing soup for them. They will land up late tonight, but boy will they be grateful for the soup. Tripti is helping amma bake a date cake. The picture above is my grandmother and me slicing dates for the cake.
I got the star out today. It looks so beautiful and sets the house in the mood for the season. Today our lunch conversation was about what we can do as a family for the CMC community. My mother wants our house to be a centre where students and young people can get together for prayer and bible study. The real star signified where Jesus - a life changing person was to be born. Jesus showed us what love means. This star on our home I know, shows all who come that there is love here too - because my mom shows it in a day to day way - I only hope I can show half as much love as she does in my life - to my patients, to my family....
If only everyone had some sort of star in their lives.
Friday, December 09, 2005
I think I'll try and explain what it feels like to live with cancer..... When Anne and I saw the first chest X ray with a mass there, sure we were shocked, but we were sure that it had to be tuberculosis. Any doctor who has a problem will most likely have tb in India.... but a 11 cm mass in the chest? I think denial is such a natural human response that it tends to surface as our most initially used one- and we both used it. I clung on to it longer than she did - refusing to allow myself to accept it until the biopsy came back in full.... if there was a chance it wasn't cancer. How could I have cancer, I was just not the type. (not the type, I wonder what that means now). Tarun Jacob was so blessed..as a kid i was a choir boy, well behaved son, 100 meter champion, district basket ball plater, school head boy, in college I had rep'd my class, been speaker for the class, served as our church sunday school superintendant, atheletics captain, sports captain, faculty students representative, College president.... there wasn't something or some sphere of life that I hadn't poked a finger into... I had fallen in love with the girl of my dreams, married her in an almost fairytale wedding , we are having a baby together and...... I have a cancer sitting inside my chest.
Do you know that it's now been 6 weeks since I have known I have never felt hopeless.
I got a call from a school teacher, soon after the diagnosis. She sobbed and cried, I could make out that she was uncontrollably distraught. I wonder why neither Anne or I felt that way.
3 times in the week of the diagnosis, once from a pastor Graham, once from Arpith our close friend and once at a personal morning devotion - we were challenged with the same question based on a miracle where Jesus asked a blind man, " What do you want me to do for you?". It was funny but till then we just kept praying for strength, a reason, but never really for a cure. Since then Anne and I have claimed healing and believe that we are getting it.
If you are reading my blog - I am not just a Non Hodkins lymphoma patient 6 weeks into chemo but I'm already a Lymphoma survivor. I'm sure of it. I just need to get through the treatment - even the big J needed his spit to restore a man's sight.
Today I wish I was in Hydrabad - at a wedding of someone special -chemo can be a drag.
Thursday, December 08, 2005
6:30 am and we were up ready to go to hospital for Chemo 6. Today would be a long day and we were prepared.
rituximab - featured alongside in that bottle is a drug that identifies a marker CD 20 on my tumour and latches on so that the body trashes the cell. It's expensive, but good stuff. 4 hours of that, 4 hours of methotrexate and vincristine. A long day it was....
But I read Lance Armstrong today -It's not about the bike. For me who chooses not to read it was a great acheivement. The book inspired me and made me realize that many of the thoughts that go through 'us cancer patients' are so universal. Emotions so common and hope so vital. I've placed an nice excerpt from the book on my Thoughts link.
Anne's parents spent the day with me in the room. The meal amma (anne) cooked for lunch was so yummy - I could taste the key ingredient - love. That really makes all the difference. My bald head sweats in agreement!
Wednesday, December 07, 2005
Anne's mom made a delicious chicken curry for lunch, and I ate like a pig. It's funny how everybody loves to watch my head sweat as I enjoy good food. Hey! anyone with bald heads out there - do you sweat when you enjoy your food, i'm curious to know?
Post lunch - i put my finishing touches to my review and set off to hospital. My cousin has come down from Madras and is admitted with a suspected leptospiral infection. I hope it settles without going into its potential complications. His family treated me like a son when I stayed a month with them in my 12th standard, and went to coaching classes before medical school exams.
Anne took my blood samples as usual in our room and we took my grandmother for one of her endless refitting of her teeth. My counts are 8000 - yipee!my albumin is high, double yipee! so next chemo should go according to schedule. Anne's OB appointment is full for this week so I get to see my baby on a scan only next week thats great because this weeks chemo will knock me out and I may have missed the appointment.
Another day ends and I am convinced that God gives us more positives than negatives in a day. The problem is we tend to foucs more keenly on that one negative and forget the five positives. I can almost imagine the big boss grinning from above above and saying - hey man I gave you a good deal!- I AGREE.
Good night - (Anne's) appa and I are going out for a late night walk.
Tuesday, December 06, 2005
I had decided to make some chicken today - I am getting fairly bored of our maid's cooking and I volunteered. Mid morning - and I wondered if I made a mistake. Garlic chicken from B.F. Varghese was the plan and I made some bold modifications like grinding some cashewnuts and chilli powder into the 'masala'. Anne and Appa are down with a cold, their taste buds are shot and are sniffing away - they both said it was good... he! he! I shall accept the compliments with all humility- as is my very nature. Tripti also said it was good... but she's such a gourmet cook that i think she's a con and is promoting budding talent.
Anne studied quite a bit today and kept reminding me that I was doing nothing much of great service to humanity. I have a "Cochrane review", a smart(?) idea I thought of but I only generate bursts of energy to work at it. It's a research option that involves looking at a lot of publications on a particular topic (anal fistula in my case) and making an good evidence based meta-analysis. I wonder anyone understood that?
Our maid made me Vadai - greedy me ate too many and I am now not going to do my dinner juistice. Tripti is eating a Vadai and my grandmother montoring her to make sure she leaves some for my mom.
Anne and I went out for a walk this evening and I went crazy with the camera. I hope you can get how beautiful it is to walk through CMC campus in the evening.
We met a couple of people on the way - One was a Doctor who was in the department I was working when I first got my chest Xray and I asked for leave - I told her it may be Tuberculosis and asked her for leave then. She said she was praying for us and I know she like many others have genuine concern. I met Anna aunty too who gave me todays poem (Dr. MC and Anna inspire us everyday with poety, verse or thoughts on a card paper).
Thats it for the day I guess - i'm tired and I have to get some work done on my meta-analysis so a very pictoral goodbye from anne!
Monday, December 05, 2005
School was just 12 odd Km from home - we live in the hospital campus and I had a whale of a time there. School friends still keep in touch, we e-group and share a lot of our lives even now.
College was a great time too, the place where I learnt what it means to be a doctor - through all who taught the science and lived their lives as brilliant examples in CMC.
I' ve linked a picture blog to this page -a taste of what college was to me!
CMC requires 2 years of Bond- a service obligation towork in an area of need. I served in a 70 bed hospital called RUHSA in a village called Kavanur and thats where I believe I learnt how to operate with some confidence and enjoy a small hospital setup. I spent 3 months after that teaching anatomy to a great gang of ist year medical students. The last 7 months of my bond were spent in a Cardiaothoracic unit that was an interesting experience, because it helped me with looking after critically ill people in an ICU setting, as well as work with a boss who was incredible as far as Bosses go!
Anne and I got married through the RUHSA stint of my bond and she did her bond in Kerala (away from me! sob!). We got together, (excluding frequent trips in between!) after our bonds and thats when I got in for a postgraduation in general surgery in CMC.
Anne is interested to do a PG in Obstetrics and is ging to crack that exam in Jan
We have both got an interest to serve God wherever he choses to place us, and towards that we plan to do work as part of a bond in the Graham stanes hospital in Baripada - Orissa.
Eight months now into my surgery course and I have been diagnosed to have a Non Hodgkins Lymphoma. I now sit at home undergoing the Chemo and this web log was an idea that sprung out of my head. I hope it helps someone somehow. I hope it helps me too - i will hopefully crystalize thoughts, realize how I spend my days and make a diary of the event with my banter and pictures.
I wonder if it will inspire - if it amuses atleast I guess thats something!
Sunday, December 04, 2005
Today was an interesting day. I woke up early to sent my grandmother off to Bangalore and spent half an hour in bed after that finding any excuse to not take my bitter medicines! Anne's school classmates drove down from Bangalore to spend time with us. Jenny and Deena. We had lunch together before they set back. Amma tried some new chicken that was really good. Anne has a cold that is slowly becoming an LRI.
I baked a cake in the afternoon- finally got off my bum to do some work and the lousy thing didn't rise. FLOP! ce' la vie.
Chapel in the evening and soup for dinner! Prayers with Anne and today will be over!