Setback

I have always held that the Gods do get jealous. Or maybe it is their way of reminding us that we are not really masters of our destiny. Maybe we fall prey to our hubris too easily! I guess I stand guilty at this moment. Till this morning I was so proud of the fact that we had gone through 3 chemotherapy sessions without significant side effects, so happy to see Ranjan looking better and thrilled beyond words when the hospital scales showed he had gained 2 kilos! In spite of some annoying occurrences chemo 4 went reasonably well. I was looking forward to a relaxed afternoon and evening, reading or watching some TV with Ranjan next to me.

We do spend such tender moments together when words are not necessary. But that was not to be. Ranjan was feeling uneasy when we got back and went into a fitful sleep. I touched him and found him warm. The thermometer confirmed my worst fear: he had fever. Not a very high one, but high enough to slam my hubris and presumptions. Over and above that his uric acid was up so the doctors had advised to cut down his protein intake. The two put together shook my I, guess fragile, confidence once for all.

Now what! Would I have to review my regimen? Change what seemed to be going so well? I guess I do, but I must admit at this moment I am lost and feel helpless and all my earlier  confidence is shaky to say the least. Mr H has won one battle.

I know I have to regather my troupes and mount an attack. But tonight I am stunned and distressed. I just hope this fever is just a small rap on my knuckles.

Tomorrow is another day! But I am no Scarlett. 

Chemo four

It was chemo day, the fourth one! This is either half way through or one third way through. Pet scan after chemo six hols the key to the question: 8 or 12! Chemo days are always bad, not so much because of side effects as they are not too bad. As I write these words an exhausted Ranjan sleeps by my side. Slightly nauseous but I think it is more the car drive and also the fact that he has to eat the rubbish served at the hospital. Now for someone who has been on an organic food diet for over two months, any chemical is quickly detected by his body and rejected. I had hoped to be back for lunch as we were on the hospital bed at 8 sharp so normal maths would say we should have been home well before 1pm. But that was not to be. We got home at 3.30! The reason: the total lack of efficiency of this super speciality hospital. As one who has managed events professionally, this made me see red.

Here is how it goes. We reach at 8 am and wait. At 8.20 or so a nurse comes in with a catheter. I am puzzled as Ranjan has a port and the last chemo was given through the port. In these days of technology why are records not kept on a computer? Anyway she is surprised and then turns to me and asks me for the tube. I am zapped as I do not know what she means by tube, and more than that why should I have it! Is it a rubber tube kind of thing as I saw one hanging from the port last time, or a tube of medicine. A mystery to all. She then mutters something and leaves. After another 30 minutes we go looking for her and discover that the tube in question is a tube of anaesthetic ointment. I offer to run down and purchase it from the pharmacy but she says that someone has already left. Needless to say that someone must have made many stops on the way as the tube finally appears at 10am. The chemo begins at 10.30 or so. Two hours and ten minutes for nothing. At about 1pm we finally see the end of the last drip and start agitating for our discharge as past experience has shown it is worse than a marathon and tests the limits of your patience. I check with the doctor on duty and she informs me that everything has been cleared by her and it is the nurse who will give us the papers.

When we ask the nurse she again mutters something unintelligible and says she is waiting from a clearance from upstairs. Now what does upstairs mean? God! It almost seemed so and even he would take pity on us. When I ask her how long it will take, I am told five minutes. When I ask again I an again told five minutes. The five minutes become an hour. And we still do not know what the problem is. Apparently the nurse has made a mistake on the file that had to be okayed by the lab or else we would have been charge double for the test. Quite frankly I would have rather paid double or even treble rather than wait for almost 1.30 hours. The price to pay was far higher.

Ranjan was in great spirits when we set off and we all hoped that this time we would beat the system and get home early and in a merry mood. But that was not to be. First the waiting for the tube, nothing short of an absurd play had a terrible side effect. Breakfast arrived and as there was nothing to do, Ranjan did what each of us do when bored: ate! There was some poor quality bread, a boiled egg, certainly not organic and some instant coffee. I knew it would have its reactions, but nevertheless hoped not. And anyway he would not have to have lunch there as we would be back home. He had even planned his menu!

Now of the 4 toxic brews that ABVD, D aka Dacarbazine, is the longest and the one that seems to be the nastiest. I wonder why they do not give it first so that any side effect could be dealt in the hospital. So the Dacarbazine drip that takes 90 minutes and then a 10 minute flush ends the chemo saga. Had we been able to leave soon Ranjan may still have come home in a better state. But the long wait when you are ready to go was enough to zap him and then the drive back in the heat and the fumes, in spite of the AC made him nauseous and feverish as well as listless. He sleeps fitfully, mumbling some incoherent words. And I watch helplessly and mad at a hospital that can never get its act togetherr! I would forgive an overworked Government hospital, but find it difficult to do so for a hospital that almost charges you for the air you breathe!

The house in which I am growing old 2

This is my den. It is a tiny room. Tiny by choice as I never wanted it to become a space that could be shared. It was for my alone time. It is warm place, flooded with pictures of times gone, happy times that bring a smile on my face every time I look up from my computer. This is where I come every morning before the crack of dawn and spend time writing. This is also the HQ of my last battle. Many changes have occurred since the fateful day I discovered I had deal with an unwanted guest for some time at least. But this unwanted guest has been a strange stroke of serendipity as it has made me stop and look again at my life and the times gone by. Just this morning as I sat at my computer I realised that this little room did not exist in the house I shared with my parents. It was added when I remodelled the house on the gentle advice of a dear friend who realised that I was sinking into a morbid depression and turning my home into a mausoleum not wanting to move a single object. When I finally understood what she meant I went all out to make drastic changed: the room in which mama died and which was my room when I lived here before my wedding is now the kitchen and this little den was carved from the erstwhile drawing room.

Today is chemo day and though the three that are over were not bad, I always feel a little anxious on chemo morning. Part of what I call getting into chemo mode which often begins the evening before and ends two days after when I am convinced that the dreaded side effects will not appear. I always try to write something before we leave. This morning I allowed my memories to run free and wondered where they would lead me. They took me back several decades to this very spot that happened to be the place where mama had placed her main sofa on the day of my wedding and this is roughly where I sat in my bridal gear just before and after the ceremonies. God what a day. People would think you are over the moon but all I was thinking was when I could take out all the pins from my hair and all the jewels I never wore and stop looking like a Xmas tree. And then I had to keep smiling at all the people I did not know and then posing for pictures. There were no stages and thrones in those days. People sat beside you on the sofa or perched themselves on the arm of the sofa while the photographer clicked away. That was on October 20th 1974 when the whole house had been transformed in wedding mode. yes those days we got married in our homes, and the empty plot next door was where the dinner was held under a tent. Those where the days!

However when the house was in normal mode the place where I am sitting was where the TV set was. What memories that brings back. Papa sitting in his armchair, with his pipe and watching TV almost religiously and often alone as TV was so boring then barring 2 days: Wednesday with Chitrahaar that was half an hour of film songs and Sunday evening when a Hindi film was aired. Then the whole room was full as many people from neighbouring homes would come. That was sacrosanct time where even the phone, there were no mobiles at that time, was attended grudgingly and if visitors came then it was a disaster. How we cursed them! Dinner was on the table at 8.45 as the film was stopped for the news. By 9 we were back in our places glued to the box.

Today I sit alone in this spot that has seen so many things, witnessed good and bad times, hosted kings and paupers as that was the way we lived. It was a space filled with the silly giggles of a teenager and the tears of a woman. But somehow it was the happiest place you could imagine and the best ever to wage my last battle from.

I could go on and on and will when I have the time to take a walk down memory lane again.

My space and time machine

Almost everyone who enquires about Ranjan's health has always some kind advice for me: take it easy, look after yourself, eat well etc. I know they mean well and are spot on as were anything to happen to me, God forbid, then the entire yet fragile support structure that I have crafted with pain to counter Mr H would fall apart and Ranjan open to all the vile side effects of chemo. The problem is that as always much of the structure is in my head. So I guess the first thing that should be cared for is my head! In normal times, when I need to restore my things in my brain, I slink in some corner of the house with a book and travel in time and space. For those few hours I get off the spinning wheel of the day and forget about things around me, specially the annoying or irritating ones. When I feel I can once again face life, I emerge rested and ready to take on the world. Books are so important to me that I have to always have on my shelf a fair amount of unread books should an emergency arise.

With the arrival of Mr Hodgkin and the upheaval in my life, the old and tested reading did not give the needed relief. Even the best thriller or most touching novel that normally would have kept me glued to it for hours fails to do so as I find myself fidgety and keyed up. So for new times new ways had to be found. Something that would allow me to travel in space and time and get my system going and happy hormones up. It was time to put one's thinking cap on and I did. The solution was the treadmill + my iPod with a compilation of songs that I had loved since my early teens. French songs, favourite bands, crooners of the past, a mixture of genres, songs I had grown with in the four corner of the world, songs that could become my unique space and time machine!

So every day, except chemo days, I change into my gym attire, put on my barefoot running shoes, set my ipod on shuffle and the volume at maximum level, set the treadmill to 6km an hour and take off on a 40 minutes travel in time and space. For those 40 minutes I am no mote the 61 one year old woman living in Delhi. I become a 16 year old dancing in a club inAnkara, the 22 year old in love sitting pillion on the scooter of the one who would become her life partner, then the 40 year woman cooking in her Kitchen in Paris, the 13 year old listening to the top of the pop song in her room in Algiers, the 10 year old dancing with her papa in Rabat. Each day is a surprise journey that brings back fond memories, some sweet, some bittersweet, but each one bringing a smile on my face. I wonder what I look like to those who pass by as I am unaware of anything happening around me. When the 40 minutes are over I am charged and happy to be me, and grateful for every moment of my existence.

So for the buddy survival kit you absolutely need a way to get off this planet for some time everyday!

I hear it in his voice

I must admit that the last months have been very difficult. Actually I should say the last year as Ranjan started feeling unwell in June 2012 and for a year we ran from pillar to post trying to find out the cause of his poor health. All possible tests and investigations were done, but they all remained inconclusive which made things harder as we were really groping in the dark. The only constants were his losing weight and his tumbling haemoglobin counts. It is only in early July this year that the beast was finally identified as Mr Hodgkin. Quite frankly this was the last thing I wanted but to finally know what it was a a huge relief as it allowed us to plan and start the best treatment possible.

I must admit that chemotherapy was not my first or come think about it my last preference, but a series of circumstances made me reluctantly agree to it. I did. But at the same time I decided to turn heaven and earth to find out how I could control the terrible side effects of chemotherapy because I could not have seen him in the throes of any of those. There had to be support therapies that worked. I did my homework better than I have ever done and worked out my brews and potions. We are down 3 and ready for 4, and it seems to be working. I keep vigil and am ready for any unexpected one, were it to happen.

The title of this post, I hear it in his voice, would not make sense if I were not to give you some background. In the past year as Ranjan's health dwindled, he sunk into depression and often use to ask me if he would make it. One of the worse moments for me was when this man of a few words, told me one day: I am falling apart. His entire persona changed and from an always cheerful and carefree man, he became sullen and withdrawn. One of the few persons he talked to was his favourite uncle. I was not privy to his phone chats but I guess there was a change.

Imagine my delight when this morning my aunt - said uncle's wife - called me and told me that she knew Ranjan was doing better as she heard it in is voice! She was kind enough to compliment me on this as she felt it was my doing. I am humbled but accept her accolade. I needed that pat in the back just to know that I am moving in the right direction. My mission is undoubtedly to give Mr Hodgkin the boot asap, but also to give back Ranjan his joie de vivre even if Mr H is still around. I have pushed him into a tiny corner of our lives and will not allow him to mar our happiness!

Thanks Chachiji for making my day!

The nose and the hair

The nose and the hair, sounds like children's classic fable the turtle and the hare! But mine is no fable or moral story but a real one. Now Ranjan has a big nose many say; for me it is part of his charm. Ranjan has, or should I say had, abundant nose hair that often needed clipping. With all that is happening I did not realise that the hair once visible had vanished and completely forgot a friend of Parul's who had cancer recounting how losing the hair in her nose was a nightmare as the nose kept dripping. So here I am with a new unexpected 'side effect': a dripping nose. The first line of defence is obviously stocking the house with loads of packets of tissue paper. But there is one more worry: nose hair is also our first line of defence against harmful environmental pathogens such as germs, fungus, and spores, and with someone with low immunity that is a big one. So what now. Help Mr Google!

I have been busy searching the net because I really do not care about a dribbling nose, but the germs and spores frighten me to death as we live in a land where these abound and with the clogged rainwater drain in front of my house it becomes a real nightmare. And it is one of the side effects no one talks about! Some patient chat rooms talk about nose filters. I guess it looks like a good idea particularly when he decides to go out to crowded places. I have just discovered they are available in India so let me see how to get them!

I guess the next hurdle are the lashes. They protect the eye from debris. I guess a woman could use false eye lashes for cosmetic purposes but I do not see Ranjan doing that! And there seems to be no other option. I guess wearing his glasses would help with the dust, debris and insects. Will see when it happens!

and the lady

After the Sub Inspector, here comes the lady. Cryptic? Read on.  One of my tools in my survival kit is getting out of the house either to shop as with Ranjan's diet one needs to shop often, as there is always something missing, or to spend some time browsing in my favourite book shop. yesterday however I had a real errand. R's favourite almost 25 year old glasses needed to be repaired. So off I went to my one and only favourite optometrist. I have been going to that shop for the past almost 40 years and it is always a pleasure to spend time in the shop with its owner and his now well grown up sons. I knew them when they were just kids. As they know about Ranjan's cancer we began talking on the subject. A lady who was walking down the stairs suddenly stopped and came back. She apologised for butting in but told us she was interested in our conversation as her husband had cancer too.

It is funny how cancer has become a conversation piece in my life. The lady had overheard me talking about all the alternative therapies I had embraced to support Ranjan's therapy and wanted to know more. So we talked sour sop, apricot kernels, ashwagandha and diets. I took her email details and promised to send her all the information I have. I did that as soon as I got home as I can now empathise with all cancer buddies. I hope this helps her and her husband.

I know many of you who read my blog may have dear ones who are battling cancer and chemotherapy. So maybe it is not a bad idea to share all the therapies I am using as off now. Ranjan is going to have his 4th chemo on Friday and till date the only side effect we have seen is loss of hair on his head and limbs. Frankly none of us care about his hair but there maybe some who would not want to loose their hair and there is a solution: scalp cooling! You need to wear a scalp cooling helmet during chemo! We have not got their yet:)

Exercise is something that always helps but a cancer patient is not always willing to put on her/his shoes and run. But jumping on a trampoline also know as rebounding is a great and easy exercise that gets all systems going, particularly the lazy lymphatic system responsible for our immunity. I advise it strongly and there are many articles on the net that you can read. A trampoline is easily available on line or in any good sports shop. I try to make Ranjan jump has often as possible.

Sour sop leaves tea and apricot kernels (vitamin B17) are also great cancer fighters. There is a lot of information on the net, just google it. These two can be bought in India. You can read the benefits and place an order if you are convinced at this link. I give Ranjan Sour sop tea thrice a day and make him chew 3 to 4 apricot kernels before each meal.

Pure Ashwagandha Root Powder was suggested to us by a friend and cancer survivor who swears by it. Sloan Kettering has published information on this herb. I source mine from the Arya Vaidya Sala's Delhi branch. The dose is 5 grams twice a day with honey. You have to insist that you want pure root powder and not the churanam.

Over and above all these, Ranjan is on Tibetan Medicine under the care of Dr Dholkar.

None of the above require stopping any treatment you may be talking.

Ranjan's chemo protocol is ABVD  (doxorubicin, bleomycin, vinblastine and dacarbazine.) This protocol has many side effects but till now, and I keep my fingers, toes and all else crossed) we have had none or very few: hair loss and drop in TLC.

And last but not the least Ranjan's diet is almost vegan, is almost as I give him eggs and fish, but no dairy, and organic. It is high on protein with two protein shakes a day (silken tofu based), and his diet includes all shades of berries one can buy frozen at many shops. His meal includes a protein, a vegetable, a salad and a dessert. he also drinks two glasses of vegetable juices (broccoli, cabbage, beetroot, carrot, ginger etc). I source all my organic vegetables, rice and pulses in Delhi where many stores deliver at home: I say organic, Altitude Store etc.

As I said we are three chemos down and have not encountered many side effects. There is a caveat though and that is that you have to really follow a Sgt Major drill as everything has to be given at specific times if you want to do it all. The biggest side effect is that the cancer buddy has to give up, or at least put her/his life on hold! A little price to pay for the health of the one you love.