Bye Bye Hospital

Yesterday, that is January 11 2014 at 6.45pm we bid farewell to the hospital I hope for a long long time. For over 7 months we had had to visit the hospital for consultations, biopsy, chemo port placing, Xrays, lung function tests, PET scans and 11 chemos! We had to deal with incompetence, incomprehension, pain, attack on all our senses and much more.

Yesterday was the chemo port removal, a surgical procedure done on the OPD. It was long and quite messy but oh darling this being India, I was able to stretch across the bed and hold Ranjan's hand through the procedure. It was comforting for the both of us but come to think about it, quite scary if one thinks of infections et al.

The doctor was very gentle and I kept saying silly things to make the mood as light as possible. But it was intense as it took 20 minutes and more than 15 odd stitches. I also decided to ask for the port for keeps. Come to think of it it has been something that I could possess that had actually touched Ranjan's heart!

Now the hitch was about how to give me the port as it was actually quite a mess. The Doc has a brilliant idea and it was given to me in a surgical glove. Quite a unique fashion statement is it not!

It was suddenly worth a few laughs and a unique photo op.

Had to share this with all those who have lived this journey with me.

Remission - the new kid on the block

We live in a world of specialists. I mean medical specialists. The human body is no longer treated as an individual whole, with its idiosyncrasies and quirks and its unique way of perceiving, reacting to and feeling things. This aspect of medicine died with the demise of the good old family GP who knew you better than you knew yourself. He would treat the person, not the disease and would modify and fine tune his treatment in accordance with the person he was healing. In modern medicine you are dissected into infinitesemal pieces and each piece has a specific specialist who will only treat what he is specialised in. Let me elucidate.

Yesterday we went to see Ranjan's oncologist with the results of his latest scan. I was very apprehensive as I was terrified that the said specialist would utter something that would alter reality. My prayers went unheard as when Ranjan asked if he was 'cancer free', the doctor in question said yes! My heart skipped a beat. Everyone knows that no cancer is cured with a few cycles of chemotherapy! If that were the case there all cancer patients would be cured.

You would be justified in thinking that Ranjan, like any educated human being, would be aware of the course cancer takes, with remission and five years protocols. I guess at one level he is. But at another he is just a scared human being who is yearning to hear the words: you are cured. Two days ago he asked me the same question: am I cancer free and it took all the skills of a diplomat's daughter to give a well sugar coated answer that would assuage his fears within the spectrum of reality. So you can imagine how angry I was when the doctor answered a convenient YES!

I knew how wrong he was. True Ranjan is better and doing the best possible but he is in no way cancer free. My Tibetan doctor did not even want to see the latest scan done shortly after his last chemo as she said it was nothing short of useless. The chemo after 6 months will reveal the true picture and that is what we are all working towards.

True there are no more FDG avid cells at the moment but only God can tell us whether they will or will not reappear. The doctor was referring to the present moment in its shortest definition. His next 'diagnosis' would be post the June scan and there is no guarantee in their books that the Yes will remain a Yes! I was also surprised when the oncologist said nothing about the enlarged liver. When I mentioned it he simply said that this was for our family doc to deal with. Specialists, remember specialists.

You simply need to type the words remission in Hodgkin's lymphoma on Google search and you will get the answers you seek and nowhere do you find the kind of YES I heard yesterday! In one article I read the following words: Remission means that your lymphoma has been either eliminated or reduced. When the tumor is completely gone, doctors call it "complete remission." When the tumor has been largely reduced but it still remains, it is called a "partial remission." Even if your disease stands eliminated after treatment is over, it is still not called a cure. Lymphomas have a chance of recurring, and the doctor will often wait for a few years before he is confident that your disease will not return. Only after that can he tell you that you are cured.  The questions are endless and the answers vary. The reality is that one has to remain on guard for all times to come as in a minority of people with Hodgkin's the disease relapses after treatment; this is most likely to happen within the first two years of remission. One has to be ready for all eventualities. That is what wisdom suggests.

For conventional medicine, if the disease relapses we get more of the same: chemotherapy, stem cell transplant etc. They have no real cure as their approach does not target the possible causes. But blissfully we are also using a host of alternative therapies and nutrition. These aim at making the body strong enough to fight any recurrence. When my Tibetan doctor read through the PET report she was concerned about the enlarged liver and the non avid nodes in the lung. She immediately fine tuned the medication to deal with these issues. But her main concern has been the bone marrow and the immune system as if these kick in then most of the other issues are taken care of.

Keeping all the above in mind, the new kid on the block - remission - is another challenge that will need me to be on my toes. So no question of the adrenaline dropping. The first thing is to gently explain to my darling man the true meaning of the doctor's YES!

Let us celebrate

Today we need a small celebration. I wish I could write to all those who have stood by me in the past few months and made today dawn. But I cannot, so this post is meant for each one of you without I would have given up long ago.

We are just back from the oncologist and according to him Ranjan is in metabolic CR (cancer remission). He now wants a scan in 6 months. Metabolic remission means that the PET is not showing any of cancerous activities. It is just short of saying complete remission because doctors wont actually say that until about 5 years or so of clear PET and/or CT scans.

So yes, let us rejoice as this is the best news we could get from conventional men in white. Will ponder about other matters when tomorrow dawns.

Tonight Ranjan gets a peg and cigar and I give myself a pat on the back!

The pet I hate

I hate this pet! Let me quickly reassure my  animal loving friends that the pet in question is not a fluffy or furry soul but the Positron emission tomography better known as PET scan. This is part of what is called nuclear medicine and uses a radioactive tracer that is introduced in the body. No matter what anyone may tell you the fact is that it  involves exposure to ionizing radiation. The total dose of radiation is significant, usually around 5–7 mSv. However, in modern practice, a combined PET/CT scan is almost always performed, and for PET/CT scanning, the radiation exposure may be substantial. Not very reassuring as again no matter what anyone says radioactive substances do not leave you easily. I remember being told when we were in Prague and the Chernobyl disaster took place that we had all been exposed to the acid rain that fell on the the city the next day. Remember this was communist Prague and there had been a complete black out of the news. Those were days before the net and cell phones. I only came to know about it when Mama rung up from Delhi! It was a French Doctor who had come to measure radioactivity levels that told me that one should not forget to mention this fact where we faced with a diagnosis. I did mention it to Ranjan's oncologist and he sort of acquiesced.

Till date Ranjan has had 2 PETs! The first one gave us a better understanding of his cancer, the second which was after 4 cycles showed improvement one being the reduction of the size of the largest node by about half. If you remember the saga there was a time when we were told that 4 cycles, 8 chemos would be sufficient. However though the oncologist said we were 95% through, he insisted on another 2 cycles of 4 more chemos and we caved in. However the Ranjan's physical and mental state after chemo 11 compelled me to 'negotiate' with the doctor and make him admit that the last one would not make a difference. However he insisted that we have a PET scan immediately. Both my other Docs were apprehensive and thought that we should wait 3 to 6 months to get a real picture. However negotiations are all about give and take and I had to capitulate and accept the PET!

Ranjan's low blood counts delayed the procedure by a week and we had the scan last Saturday and the results yesterday. I do not know anything about scan plates etc but my knowledge of English is tolerable. This is what was written in the conclusion: as compared to previous scan dated 15-1-14 the scan findings are largely unchanged. No new lesion noted. Puzzling is it not? When I sent this to the oncologist and asked him if it was good news, he answered: Yes!

Donning my common sense hat I feel a little disconcerted. If there has been no apparent change, then it is not wrong to think that chemos 9, 10 and 11 had no real effect on the cancer but increased the toxicity in the body for no real reason and suppressed his bone marrow unnecessarily thus reducing the effectiveness of the body's natural immune defences. I could not but kick myself for not having heard the silent cries of Ranjan's body and my gut feeling. Actually it was a catch 22 situation and there is no point of crying over spilt milk. One lesson learnt is that next time, though I hope there will be no next time, one will listen to one's gut feeling.

Yesterday my heart skipped a beat and I almost choked when Ranjan candidly asked me whether his cancer had gone. How could I tell him that for the medical fraternity any cancer patient was in remission for 5 long years with a Damocles sword hung on his head? All I could say was that we were done with the modern medicine line of treatment and that I had always told him that in the best case scenario chemo could only deal with 80% of the problem, the remaining 20% was to be taken care by his own immune system. I know modern medicine does not believe in total cure. However there is a cornucopia of treasures that nature has given us that can heal and cure cancer if one is willing to play the game.

Over the moon

I needed a sign to give me the boost I so need to keep the adrenaline pumping. For the past months life had moved from chemo to chemo in rhythmic movements of 15 days. It was to go on till December 27th, but then chemo 12 was cancelled and suddenly time took on another pattern. We were a bit lost and I was frightened of the future. Let us not forget that the next two blood counts in spite of booster shots were scary to say the least. I almost felt that I had let my guard down and missed something. I felt almost guilty. I was convinced that all the support brews and pills would have protected the immune system, but seemed like it had not quite happened the way I had hoped. I went into damage control and pumped Ranjan with extra protein and other stuff. Then came blood test day and the wait for the results. I was anxious and paced like a lion in a cage.

By 6pm I had bitten my nails to the core. That is when I got the SMS informing me that the results had been uploaded. I was scared but could not wait and downloaded and printed the results out and WOW there was the sign I was so desperate for. FOR THE FIRST TIME IN MORE THAN 18 MONTHS RANJAN'S HAEMOGLOBIN HAD CROSSED TWO DIGITS: IT WAS 10.21. There was my sign. Somehow I knew that it would be all uphill from now on. True we were not completely out of the woods but it looked like the immune system was working. His White blood cells were 4200 and platelets 350 000. The adrenaline rush was comforting and welcomed. It was time to take the challenge head on.

So tomorrow is PET Scan and I am sure it will be good news. Then we will schedule the removal of the chemo port as having it there is a reminder of cancer and I do not want ANY such reminders. Then we will go full with the alternative therapies and I hope that June 2014 will bring the miracle I seek.

My desires, aims, aspirations and resolutions for 2014

Every year it is customary to make resolutions. It is almost a joke as they are broken quicker than they are made: the no smoking, exercising, etc etc. Some years I have too have made my list of resolutions and broken them with impunity and alacrity. Then as I grew older I stopped doing so, or of I did they remained in my head. So what got me to want to make a set of resolutions this year and not keep them inside me but write them for all to see. The answer is simple: Ranjan's  Cancer! The reasons are quite complex so let me elucidate them a little before I actually share that list. Ranjan's brush with the pearly gates as one has to admit that we were almost there, brought to the fore what is truly important and what simply depends on what is truly important. Confused? Read on. When we were all healthy and happy much of what I sought, or may be we all seek, was quite wild and even ludicrous. I will not even go there but let it just be said that everything that went of the list presupposed that we were healthy and happy. Then Ranjan started fading away and for one long year I groped helplessly for answers. In those days there was only one thing that could and would have gone on any wish list: Ranjan's health. All the rest was irrelevant. One could have offered me the moon, the money I needed for pwhy, a magic wand to rebuild my crumbling home and more, I would not have wanted it. I knew that the foundations of my existence and essence were held together by one man. I gave up all else for one mission: to get Ranjan back on his feet. We are not quite there, but the light at the end of the tunnel is now visible, albeit far away.

As I nursed Ranjan back to health I became aware of what was really important in life and what was frivolous and shallow. I also realised that nothing is eternal and much of what we want is mere hubris. We are not God and should never fall into that trap. We have a limited time on earth and with our loved ones but we have the choice to live life fully or waste it away skittishly.

Today on the first day of this New Year I have made a few resolutions. Here they are:

To be grateful for every moment we have
To live life at its fullest one day at a time
To be grateful for all the goodwill that has come my way
To keep in touch with friends as they are precious
To try and not fall into emotional and hurtful traps
To only think positive thoughts
To laugh and fill  life with happy thoughts
To look after loved ones but also myself
To say all that has been left unsaid even if it is difficult
To face every challenge head on and with dignity
To accept with humility the presence of a higher force and be eternally grateful for His presence.
To strive to complete all unfulfilled tasks, even those one has been shunning
To look at my face in the mirror every day and like what I see
To make gratitude my highest priority

I will end this post with a quote I love:

“Write on your heart that every day is the best day in the year.”  — Ralph Waldo Emerson

Wisely, like good children

The door bell rang. It was a parcel for me. A surprise as I was not expecting anything. Normally the parcels I receive these days are various supplements for Ranjan and things like soursop leaves and hemp seeds! AsI had not placed any order, this parcel with German stamps was something out of the blue. I was excited and opened it and out came tumbling loads of chocolate bars and boxes of chocolate truffles. And above all they all had the word ORGANIC written on them! They were a Xmas treat from a wonderful and generous person whom I consider my child. She knew how much Ranjan and I love chocolate. In the packet was a lovely letter. There was also a note saying that she had read my post on how bad sugar was for Ranjan and left it to me to decide what to do. I was tempted to hide the packet from Ranjan but then I simply gave in. How could I keep this wonderful gift from Ranjan and then they were organic, so I guess that made them kosher.

But that is not all. These chocolates were not simply some bars taken off a shelf and sent off. Each one of them was laced with love and overflowing with good wishes and they could not in any way harm Ranjan. They had been lovingly packed one evening and were accompanied by a letter that was filled with all that is beautiful and good. These were not sugar laden titbits. They were an expression of love and goodwill.

I rushed upstairs with the letter and a packet of truffles, sorry organic chocolate truffles, and stuffed one in Ranjan's mouth. The surprise and delight in his eyes was worth the world and more. He looked like a little boy getting his favourite treat. It was a precious moment.

We will eat the chocolates wisely like good children. I think we both deserve this.

Bless you Claudia!