Homeless

It doesn’t feel like anything else. I feel like someone who has been unconscious for years and has suddenly woken up to another reality, another world I am unfamiliar with. As everything else is so new, so alien – and since I cannot remember the past – I don’t now know what to do, or how to handle that strange feeling of emptiness inside me.

It is not similar to what I felt after the death of my father who passed away in my arms at the end of a protracted struggle with another illness. Yes, my father died at a relatively young age; still, he had lived life to the full. We knew why the illness chose him; he had called it upon himself. He had turned a blind eye to doctors’ advice and opted for a prolonged, slow suicide. But he wasn’t five-and-a-half years old. The life he had was probably longer than the life he would have had.

Luca, on the other hand, was not there yet. As the famous Turkish poet (indeed a close friend of my father) Cemal Sureya said, “every death is an early death”, but he has not had enough of life to be able to say “keep the change”. Not to mention the fact that he did not give up on the future voluntarily. There was no known cause for his disease. The angel of death, who selects one among 1 million children every year, had decided to fill his annual quota with him.

Thus, what you feel doesn’t look like what you would feel when you lose somebody you love, even one of your parents. Since the memories you have collected are limited, when you close your eyes, what punctures darkness is not happy moments or memories. The last few weeks, the last day, in fact the last night – that indescribable, excruciating last night – creep through every single hole, like a lethal chemical gas, filling the void and asphyxiating every bit of emotion it encounters. It leaves only an eviscerated, soulless shell behind.

Of course life goes on. You don’t want to stay in bed the whole day. You cannot sleep anyway. Alcohol, anti-depressants, or different combinations of these don’t work. You don’t want to stay alone, because whenever you do, the chemical gas returns. Just for the sake of living, you are obliged to get by. You try to distract yourself and build a routine that reeks of “the normal”.

And you do. You spend time with close friends who won’t make you tell the story from the beginning and don’t repeat clichés like “words fail us” or “there is no way to describe your grief” (not that they are wrong or you don’t appreciate them; they are a thousand times better than utter silence); you eat, drench your suffering in alcohol, watch the World Cup. Then, suddenly, while chatting about something trivial, you find yourself talking about him. “He loved football too. When he grows up, he’ll play football probably”, you say, and take a pause there. What did I say? Did I use past tense? “Loved football?” Did I say, “when he grows up”? But he won’t grow up. And you reach for another bottle of beer.

Even when you realise you are being emotional, in fact simply irrational, your compass is him. You want Sweden to be defeated by England for example. When they concede a goal, you rejoice. Then you remember that only a few days ago, you were rooting for Sweden – how you were explaining Swedish jerseys to him. “Like the Minions. They have the same colours as the Minions”. He laughs, feels a sudden joy. “Minions!”, he says. Grandfather, grandmother, bonus grandmother cheer for Sweden shouting, “Go Minions!” He wants to stand up, to jump. He cannot. Because he cannot stand up.

When that memory interrupts your fragile routine, your attempts to reconstruct a new “normal”, you collapse. You are instantly detached from the present, your surroundings, even the whole world. If your friends are close enough, they notice it and bring you back to the present, quietly. You return, until the next interruption.

Some time after, you start reflecting on some of the things someone you care about told you, “slowly, step by step”. Or the gentle reminders of his doctors, a mantra you have memorised over the years, “one day at a time”. That all sounds reasonable but weren’t we supposed to get rid of this when all is over, one way or another? Weren’t we going to be able to re-establish the link between the past, present and the future? Why can’t I still make plans about the future? Why don’t I want to remember the past at all?

The present? Well, it is the incarnation of Dante’s Inferno. I have already passed through the door upon which the words “Abandon all hope, ye who enter” (Lasciate ogne speranza, voi ch’intrate) are inscribed. I have started travelling down the concentric circles of hell. I have been conversing with sinners and damned souls hoping to come to terms with anger and the feeling of injustice. Knowing of course that no matter what I do, I cannot bring him back.

As I know that I cannot go back home, that there is no home anymore, that I have lost my sense of belonging, the only thing I believed in, the deepest and most genuine love of my life.

💚

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Our big little man

The roller-coaster that we call our life has presented us with a few surprises since we last posted here. Slowly, but resolutely, Luca recovered from his first chemo and even managed to receive a second, reduced, dose without suffering much.

As we were preparing to head off to Barcelona to start the immunotherapy, we got the news from that his disease is not considered to be stable enough to start solo immunotherapy, that the only available option now is a combination of chemotherapy and immunotherapy which he would be given as “compassionate use” thanks to his doctor’s good relationship with Memorial Sloan Kettering in New York (this is a brand new trial available only in New York). We were not sure he could body handle such a heavy treatment, but he was doing so well that we could not give up. His doctors in Sweden concurred. We had to give it a try.

And we did. We spent three weeks in Barcelona, where he had the first cycle of the so-called “combo”, five doses of chemotherapy and four doses of immunotherapy. The latter in particular was extremely painful, and combined with a mixture of morphine and other painkillers and antihistaminics, it knocked him out.

But our little big man was strong. Contrary to our and his doctors’ expectations, he weathered the storm quite smoothly, building legos, playing “bad guy and police”, running around and devouring unquantifiable amounts of sushi.

There have been moments when we have been getting close to losing hope. We know from past experience that the disease is a sneaky little scoundrel who likes to play games. So we are not getting carried away. But just as we are about to set off for Barcelona for the second cycle, we feel a little excitement that was not there before.

We owe it to him. We owe our will to fight, our strength, our “everything” to him.

Please continue keeping us in your thoughts and prayers.

P.S. The doctors will decide whether the treatment works after the second cycle. In case we continue the treatment, we will need help to amass a moderate amount of money to finance our expenses and the rest of the treatment. Nothing needed for now.

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“Pain is just is”

I wanted to write about “pain” for some time now, both physical and emotional pain, but it was not the right time for it. I wasn’t inspired or perhaps I didn’t have enough experience of pain to write about it

It is somewhat odd for me to say this aloud as I firmly believed until recently that I have generally been a tormented soul since the day my father gave me the Russian classics to read over the summer holidays (I have always blamed him for that). Not that I have been exposed to vicissitudes of life any more than others. On the contrary, I have been quite lucky most of the times, with more ups than downs. So I am, and have always been, aware of the role of agency in the experience of pain, subjectively speaking.

Perhaps I got wiser, and became more immune to my mind’s tricks; or external conditions have changed, to such an extent that the pain and suffering I had experienced in the past have started to appear unimportant, even trivial, compared to what I have to live through in the present moment. This has not altered my “relationship” with agency. Running out of scientific options to appease my mind’s lust for suffering, i.e. therapy, (increasing doses of) medication, I have turned to spirituality, exploring the world of meditation and mindfulness under the wise guidance of mamma. From the work of Byron Katie to the teachings of Eckhart Tolle.

To be frank, and fair to my guide, I have never mastered the art of spirituality as much as others for I have not been immersed in it long enough. Chances are I am still not committed enough. But it helped; it gave me a different perspective on life, and more importantly on my understanding of time. I have learned to enjoy the present moment a little more – a giant step forward for someone as obsessed with the past and the future as me; and I have certainly become more skilled in dodging the tricks of my mind which has never stopped playing the role of sirens luring the sailors.

A series of related incidents or processes, all taking place within the last few months, culminated in probably the worst “present moment” of my life and fundamentally reshaped my relationship with pain and suffering, or better put, the way I see the role of agency in the experience of pain and suffering.

I was listening to a podcast on Very Ape, which is described as “a cosmic conversation about psychedelic healing, consciousness expansion, revolutionary politics, sex and art” by its hosts, the documentary filmmakers Sean Dunne, Cass Greener and Maura McNamara. It was a conversation with Aella, my recent Twitter discovery and obsession, on acid tripping (LSD, mushrooms and all). One of the hosts, Cass, gave me the quote I was searching to begin writing, in reply to Aella who was describing one of her “trips”. “Pain is just is; suffering is optional”. “Suffering is saying no to pain”, confirmed Aella.

The contexts were completely different of course; so were the experiences that were talked about. And yet, there was still something that rang true, something that seemed to fit with my own experience of pain and suffering.

On the one hand, they were, generally speaking, right. Suffering is optional; we have the power to define our relationship with pain, what we make out of pain. We may accept it as it is (that’s what the gurus of mindfulness would tell you too); or we may accentuate it, aggrandize it, by turning the ephemeral into the perpetual, the microscopic into something monumental.

On the other hand, this did not sit well with the experience of physical pain, especially pain which is not one’s own choosing. Like that of a small child – who happens to be your own – who has to undergo a very painful treatment to beat an almost invincible cancer. Having no alternatives – since there is no such thing as painless, “peaceful” death – or having the choices made for him by his parents who have no clue as to what is best for him.

Once the choice is made, and the moment of reckoning comes, you feel physical pain too, in anticipation of his pain, on top of the emotional pain, of having made the choice, a choice which would lead him to suffer. You watch three nurses and a doctor preparing syringes upon syringes of morphine and other painkillers. The doctor explains to you that the pain he will have to endure will be excruciating, hitting around the 15th minute of the injection, peaking at the 18th, then hopefully dying down. You try to picture it; you can’t. And no wonder you can’t, for the pain is indescribable, almost ineffable. He stops doing what he is doing; his body is crawling, taking the proverbial fetal position which has come to symbolize, ironically, both physical and emotional pain; the nurses rush to the syringes which disappear one after another; and the little one starts experiencing something that is not so dissimilar to that described in the podcast. He becomes high, drugged, still in pain, mixed with nausea, to the point that the two become identical, and yet “still” in pain. So tangible that you could almost touch it.

The pain subsides; yet the “trip” is not over – not for him, not for you. As he passes out, your physical pain turns or merges into a consuming emotional pain. And tears.

At that fateful moment, yes that particular “present moment”, you ask yourself “what did he do to deserve this?”. What did we do to deserve this? What did I do to deserve this? Can I use the power of agency to lessen my suffering caused by his suffering? The suffering that is caused by a very real, palpable, physical pain? Does he have the option to say no to pain? Do I?

Just a string of meaningless rhetorical questions…

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A love like no others

A dark hospital room illuminated only by the dim light emanating from the IV drip he is attached to day and night, the silence interrupted by the odd beeping of the machines when the quiet flow of the “toxic cure” is blocked. A frail, pain-stricken body tossing and turning in bed restlessly, hugging a brown or blue monkey in search of a sense of security.

The concomitant loss of the sense of time and space. The past reset since that fateful day when you walked into the room where you are told by a caring doctor that the “entity” they discovered is malign; the future vanishing into thin air when you realize that all you can do is to go through one day at a time; eternally trapped in the present, trapped into now and here, trying to make the best out of it, or to avoid the worst of it. A calendar dotted not by festive days, but by weekly or monthly intervals, depending on the type of treatment he is currently on, in between the start and end days. An episodic existence indexed on “good” times and “bad” times, an itinerant life where “being home” is a luxury you cannot always afford.

Notes detailing which medication needs to be given when and at which dose, a list growing uncontrollably as side effects of chemotherapy kick in; text messages between mamma and baba outlining the “symptoms of the day” or offering a tally of the quantity of food and liquid he has consumed, accompanied by a smile when the figures are relatively high; the unique joy you feel when the number of meds he is on is going down while the quantity of food he consumes is increasing, sometimes to the point where you enjoy the “very bearable lightness” of not counting.

The dismal realization, which mostly hits when you are alone or while watching the little angel sleeping, that this is his “normal” life, the only life he has known – a life where he can only attend birthday parties of his friends or take a swim in the pool when his blood counts allow for it; where plasters or bandages covering the countless punctures in his frail body turn into an object of obsession he cannot live without. The intense feeling of revolt and the profound anger that gradually become the “wallpaper” of your existence, running in the background of everything you do; the often unfulfilled quest for compassion – not differential treatment or pity. Just pure, simple compassion.

All this combined with a firm determination to persevere against all odds, defying statistics and resolutely chasing miracles. Encouraged by his superhuman strength, his “epic” struggle; rewarded by his boundless happiness and his disarming smile; motivated by his eagerness to turn every ordeal into a game where the good guys always win, where the Green Ninja defeats the Snake or the Great Devourer, where Minecraft Alex triumphs over the Skeleton or the Zombies. A hero who doesn’t mind learning to swallow pills while his peers play hide and seek in kindergarden; a little big man who thinks being bald is “cool”; a “peaceful” warrior who ponders over his next lego project while surrendering his teeny-weeny finger to the nurse for his 1500th blood test.

A boy with a will to live like there is no tomorrow. Maybe there is no tomorrow. Maybe he knows something that we, adults, don’t know. Maybe he has a mission, a purpose to show us all that life, however fleeting it may be, has a meaning that transcends time and space as well as the worldly and the spiritual.

For us, his family, he simply means “love”. But a love like no others.

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A life like no other (in pictures)

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When you are attached to IV pumps which release the “toxic cure”, and you feel nauseous and weary…

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There is not much to do other than playing Minecraft on i-pad or building legos…

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You eat whatever you find, hoping that he “eats” too while empty cups and plates are staring at you… You feel blessed when Barncancerfonden (The Cancer Foundation) brings good food every Wednesday…

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You pass through “children’s books” (!) that explain cancer to 5-6 year olds in a way they could make sense of it… And adult books that try to teach you “how to live with cancer”…

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Ending up in “sköljrum” (the special rinsing/cleaning room) to leave the urine and sometimes other bodily secretions of the loved one…

You hear Louis Armstrong’s unmistakably raspy voice in your head “and [you] think to [your]self what a wonderful [life]” this is.

 

Day of reckoning

We have a virtual family. The neuroblastoma parents. A closed group on Facebook with over 3000 members. All sharing the same predicament. Suffering from the same ordeal. Asking questions, trying to learn from each other’s experiences, getting advice; sometimes just venting out their frustrations with the “normals”.

These are some of the things we, as a family, share, and you, the “normals” don’t and cannot understand. (Quotes are anonymized and you cannot find them on google since this is a closed group.)

“Nobody understands what we went through or are going through.”

“It’s so true. Ppl ask how he is but there not really wanting a full on answer. Then say but he looks so healthy! I want to scream at them but can’t no one seems to get it.”

“So true! And some say ‘we know how hard it is’ but the truth is, they have no idea. Only other survivors parents get the whole picture. I also agree that some ask how everything is out of politeness but don’t even want to listen to what’s going on.”

“Agree or how they think you should put your life on hold. When all you want is a glimpse of happiness and normalcy. There will always be the ones that don’t understand fully or those that will judge every step you take.”

“No, they don’t. I would never wish this life on anyone. People complain about having too much of this or too little of that but they never had to watch their child go through these horrible things. Our children shouldn’t be fighting for their lives when they’re so young and it sucks! I hate this life. I keep saying I need a vacation from my life but then I look at my daughter and I know she can’t take a ‘vacation’ from this so I put one foot in front of the other, smile, and keep fighting! This is our life now, whether you’re just starting out, in the middle, or you’ve been done for years. Our fears are all the same.”

I called the feeling, the fish bowl, when my daughter was diagnosed. I was put in a fish bowl and I was in limbo – and I could see out and everyone could see in but no one wanted to be in the fish bowl with me ( don’t blame them). They were all so busy and the all ran by sooooo fast – some would wave as they wizzed by, others would sit and try and talk through the glass for a while but they couldn’t stay long. I wanted out so bad – but you know what… I still climb back in there from time to time and hide away from the world and it’s now my safe place – no one comes in – I just sit there and watch the world wiz by while I hug my little girl in the stillness – very aware of how blessed I am to know how to stop, slow down and appreciate what’s really important.” (Emphasis mine).

And some still – yes, still! – tell me “don’t write”, you are feeding the anger of people you address. You know what, when I feel less lonely, I write about other things too. Not only cancer, or the gloom and the darkness. And you know what, my writings get gloomier as the day of reckoning approaches. That fateful moment most members of our virtual family do face sooner or later…

 

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Living with cancer: What I have learnt, what I will never learn

This piece, originally published in Ahval, was widely read and received a lot of positive feedback from people who had to struggle with cancer, either themselves or via their loved ones. So I am reproducing it here as the audience of my personal blog is different from that of my professional writings. Two clarifications:

  1. An oncologist follower kindly warned me that Point 3 could be misconstrued as implying that genetic factors do not play any role in cancer. Of course it does, in many types of cancer (breast, prostate, leukemia, to name but a few). I was referring specifically to childhood cancers and in particular to neuroblastoma in that paragraph, and the likelihood that the disease is transmitted by the mother or father of the child. We have been informed that the only “statistically insignificant” hereditary factor in neuroblastoma is the incidence of childhood cancer in the parents’ family.
  2. Luca is being followed closely by top oncologists in several countries as it is a very peculiar and rare case (I don’t want to name them as I have not sought their consent), including such institutions and associations as NANT (New Approaches to Neuroblastoma Therapy – http://www.nant.org/) and SIOPEN (International Collaboration for Neuroblastoma Research – http://siopen.org/wp/). The information I provide in the article are based on the knowledge we acquired over the years and our own experiences.

**

18 March 2018, Barcelona

I -we- have been living with cancer for almost four years now. In fact, it would be more accurate to say we have been ‘trying to live’, as our life is quite different from yours. I am not even sure if it is close to what we usually call ‘living’.

Our life has been a roller coaster since my son, who will turn five this Sunday, was diagnosed with neuroblastoma when he was 11 months old.

Sometimes the ride is slow, almost ‘normal’; then suddenly it accelerates, reaches the top; you think you have gotten over it, you walk on air. Then the car starts to go down full speed… Making you feel inside out. It feels you are not going down, you are literally falling.

You keep on falling and falling. You long for a stop, an end to this turbulence. It never happens. The control mechanism has broken down; the person in charge of the ride does everything she possibly can, calls others for help, but the open car does not stop. It torments you – both the victim in its claws and those who love the victim more than anything else.

Some of you may already know the story of my son. Not that we wanted to share it publicly (you will understand why). It was private; private for him, private for us. But the cancer relapsed after a long and agonizing treatment process and the only alternative that seemed promising was available in a hospital in New York. We could not have afforded to take him to New York through our own means, hence we were obliged to launch a fundraising campaign. We shared our story with everyone. True, we have not been able to raise the amount to take him there, but we were surrounded with an unexpected, seamless flood of love. Luca (without being aware of it) has turned into a modest icon that managed to overcome the polarisation in Turkey and to bring thousands of anonymous people living in different parts of the world together. And the money we raised did help him to live two more years.

The moment our story was heard, relatives of many neuroblastoma patients from Turkey reached out to me, asked for help, tried to learn more about new treatments available abroad. So on the occasion of his birthday, I have decided to share with you the little that we have learnt in the past four years with the hope that it might help those who struggle with this deadly disease.

First: Never believe in what you read on the internet or hear from others. Each and every cancer case is unique. Interpret official statistics in the same way. For example, a child who has neuroblastoma at stage four has a 50 percent chance of disease-free survival. But each time there is a relapse, the percentage drops. Yet, as any statistics expert would tell you, even if this possibility drops down to 10 percent, your child could be the one to survive among those 10 patients. Or a newly tested drug might alter the odds.

Second: Never trust anyone other than your own doctor for your child’s treatment. A good pediatric oncologist would be familiar with new treatments and consult her colleagues about your child’s condition anyway. But the reverse is also true. An oncologist who respects her profession would never comment on your child’s case based on the test results you send via e-mail. Almost all advanced treatments are available in Turkey – as long as you have the financial means. But there is still no cure for neuroblastoma; if your oncologist tells you that there is a type of treatment which would fully cure your child without consulting anyone, immediately ask advice from another expert (not by sending an e-mail, but by taking your child to the expert).

Third: Don’t blame yourself for your child’s cancer. Including neuroblastoma, none of childhood cancers (apart from a few exceptions) have genetic causes. It usually emerges at the embryonic stage, when the baby’s cells are developing. Therefore it is sometimes identified even before the baby is born, thanks to new diagnostic tests. In the case of neuroblastoma, the only ‘statistically insignificant’ relevant genetic factor is having a children’s cancer case in the family. But, to reiterate, even this correlation is too small to be taken into account. In other words, your child having neuroblastoma – depending on what you believe in – is either the result of fate or simple coincidence.

Fourth: Children respond better to treatment than the adults. They are stronger; and most of them will not even be aware of their disease up to a certain age. Therefore as parents, you have a great responsibility. The first advice we have received when our son was diagnosed was ‘to treat him as normal as possible and to live an ordinary life’. Enjoy the little breaks when your child is fine; let your child go to school; don’t be over protective.

Fifth: Try not to lose your hope. Yes, neuroblastoma have the second highest death rate among childhood cancers. However, a lot of money and energy is spent all over the world to overcome this disease and it is quite likely that there will be a breakthrough in the next couple of years. To the best of our knowledge, there are at least 30-40 trials going on as I write these lines. These include conventional chemotherapies as well as new treatments (ALK therapies targeting genetic mutations; various types of immunotherapy that teach the body’s immune system to recognize cancerous cells; new methods of radiotherapy or stem cell transplantation; CAR T-Cell treatments based on the idea of removing white blood cells from the body, genetically engineering them so that they can recognize cancer cells and then injecting them back to the body are the first ones that come to my mind).

Here let me quickly address a question that has often been raised. No, modern medicine does not rule out organic treatments. It only demands that the effectiveness of those treatments to be clinically proven. Take the oft-mentioned case of a vaccine which ‘cures’ cancer in Cuba… This is to a large extent a myth. Yes, there is indeed a type of vaccine that is believed to be really effective, but it only works for lung cancers among adults and it is now being clinically tested in the United States. Large pharmaceutical companies would get the patents of such treatments, drugs whether they are developed in China or Cuba, and test them. Apart from that, oleander (zakkum), the herb X that only grows in the Caribbean, the extract of the tree Y, these are all myths produced to exploit desperate patients.

Do these help some patients? Probably. But this does not mean that ‘alternative medicine’ can be used for children or for all types of cancer, offering a cure so to speak. To the contrary, it is very likely that you will make things worse by resorting to such treatments as their long terms side effects will be largely unknown.

The bottomline, then, is not to lose faith in science. Modern medicine discovers everything that works and makes it available. For example, it is known that cannabis (marijuana) oil can be useful for treating neuroblastoma and some other types of cancer. Hence, its medical use is legally allowed in some countries and in some states of the United States. Even in countries it is banned, it is possible to find and use it, as doctors will most likely turn a blind eye to them.

Don’t get me wrong; when I say don’t lose your faith in science, I mean the researchers and clinical doctors who have dedicated their lives to finding a cure. We have have met several of these along the way. They do not benefit financially when they admit a patient to a clinical trial. In any case, these trials are often free of charge. This is not true for pharmaceutical companies driven by profit like all other capitalist organisations. But this means that they do want their drug to be effective as they can make a fortune out of this. This is why, for example, a large pharmaceutical company would not hesitate to get the patent of a drug even from those countries under a political embargo.

In a nutshell, if your child has neuroblastoma, your target should be to extend her life as much as you possibly can without ignoring long term side effects and reducing her quality of life. A few years is sufficient for a revolution to occur in the field of medicine.

Last word. To hope, not to lose faith in science, trying to live a normal life… As a parent who has been trying to coexist with this disease for the last four years, I am very well aware that these words are meaningless at most times. When your child crawls in pain, when she vomits those few bites she has hardly swallowed, when she asks you why she does not have hair like other children, when she melts away in front of your very eyes… Then nothing helps, nothing makes sense.

There is no way to grasp this if your child is not diagnosed with a similar disease. Do not judge those parents; but do not treat them differently either. And do not ever have pity for them. That is insulting to their and the little one’s heroic struggle. There are a thousand ways to support them. A brief text message you send them without expecting a reply or most of the time to just ‘be silent’. If they need you by their side – and they may not, do not get offended if this is the case – try to just sit silently by their side. Without saying a single word.

For there is nothing you could say to someone whose most precious has been hovering between life and death.

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Chemo rage

“Pain is good”, says the doctor. “We are killing nerve cells. Pain means it works”. And you know he is right. You are in war, a war with no rules. No jus ad bellum – the cancer does not consult the UN to wage a “just war”; no jus in bello – the cancer does not follow any rules to minimize pain and suffering. If you don’t kill it, it kills you. If you try to avoid chemo-pain, you will get tumour-pain.

But how do you explain this to your little one who asks his mother, while the doctor tries to explain the process, whether he will die of cancer? “Of course not”, she says. “Of course not”, you say. “Of course not”, the doctor says. The little one believes in you. The green ninjas are going to kill the cancer. The pain is part of the process. So is nausea, vomitting, loss of appetite (hence weight), atrophy, numbness – and a “uncomfortable” one at that – and sleep, sleep, sleep. Only to wake up to more nausea, with more dark circles under the eyes.

Google tells you that personality change is not an uncommon side effect of chemotherapy. It is called “chemo rage”: “Anger is a completely reasonable response to cancer and the many difficulties it brings. But for some people, their cancer treatment is accompanied by a sudden, uncharacteristic increase in irritability, angry outbursts, and even aggressive behaviour. This can be really alarming and upsetting for both the person going through cancer and their loved ones.”, writes a decent website.

The little one does not have chemo rage. He is too small to feel anger, or to name the feelings he experiences in those terms. But “the loved ones” the above excerpt refers to, and indeed “the loving ones”? What about the anger they experience? The rage that comes with helplessness, desperation?

Some say “don’t over-dramatize”. It is not only you. It is not only him. But you know that it is not only him. In fact, you have already witnessed several loved ones losing the battle. But losing your child? To this beast called neuroblastoma? A beast which targets only 1.1 percent of the kids according to the statistics of American Cancer Society?

“Don’t refer to him or his case to explain things”, they say. “Don’t use him as an excuse”! An excuse? What the f.ck are you talking about? That thing you call “excuse” is the backdrop to my life, even if vicariously. I work to distract myself. I write to vent out my frustration. I am doubly angry when someone hurts me, because anger is the wallpaper of my everyday life.

No, I don’t expect you to empathize with me – you can’t; I don’t expect you to treat me differently – it won’t help; I certainly don’t want you to pity me – it would an affront to our struggle, to what we have already achieved. If you really want to help, be silent. Don’t worry, anger does not make one blind or irrational. I don’t go around and look for someone to dump my anger. On the contrary… I avoid trouble, because I am already troubled.

I have chemo rage. Not because I receive chemotherapy – I wish I could in his stead – but because the first thing I see every morning when I go to the kitchen to prepare some coffee is this:

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Again (update from Luca)

Unfortunately, Luca is not stable anymore. After four months of “normality”, the disease is back with a vengeance. He was taken off the LA trial, and after an intense weekend of email traffic among oncologists from four countries, we brought Luca to Hospital Sant Joan de Deu in Barcelona which offers the treatment developed by New York Memorial Sloan Kettering for which we did the fundraising two years ago.

Time is running out; Luca is not well; so we need your prayers, good wishes more than ever.

P.S. We will try to keep you posted. We may also need to start a new fundraiser as we are now operating on a very tight budget (your contributions already took us to Michigan, Los Angeles, and now Barcelona, enabling us to give him the best treatment available. We are, and will always be, eternally grateful for that.)

http://lucacan.com/again/

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The art of war – Part II

If I had a chance to meet the Chinese master Sun Tzu, I would have asked him a simple question: “How do you wait until it is the right moment?” Because if your sense of dignity, self-worth, hence your mental health and very survival depend on fighting back, then when you cannot fight, for one reason or another (it could be the wrong moment; it could be the wrong war; it could be a just war with no winners), you will feel emasculated, even castrated to use the psychoanalytic jargon. I am not a big fan of either Freud or Lacan, so I will not bore you with things that I do not believe in myself – i.e. the castration complex.

But there is a sense in which the feeling I experience when I cannot fight back for what I “perceive to be” a just cause resembles castration. I cannot fight against cancer for instance. I am doing anything in my power to keep my loved one alive, but I know that this may well be not enough. There were times when it was indeed not enough. I did experience the agonizing sense of helplessness, the desperation Andy Whelan has so eloquently described watching his loved one, the little yet stoic Jessica, suffer at the hands of the beast. And this makes me angry. I feel like exploding in fury and frustration; I want to scream as loud as I can, as if to reach God/the universe, “this is not fair, this is not fair”. Instead, I implode.

And you cannot fight when you feel, or really are, weak. If your enemy possesses “superior strength, evade him” the wise master of art said centuries ago. Cancer, for now at least, is of superior strength. It comes in different guises. Sometimes it takes the form of childhood cancer; at other times it splits into two and implants itself into different organs of another loved one. It develops resistance to new forms of treatment; it hides under the cloak of other diseases to prevent defeat. It does seem to be familiar with the master’s guidelines as well; it is “extremely subtle even to the point of formlessness … extremely mysterious even to the point of soundlessness.”

Power can take more shallow, more blatant forms as well. Sometimes that which you cannot fight – or not fight yet – is an institution. Sometimes it is an individual like you who is protected by vested interests. As with cancer, you know that you cannot fight it, for you would lose. You may wield more power, enjoy more self-satisfaction (than in the fight against cancer), but the price you would be pay will be high. You know that when you are taking on “power”, institutional or individual, you must “Attack him where he is unprepared, appear where you are not expected.”

So we are back to square one. How does one wait? Where does one get the strength to be patient? And perhaps more importantly, how does one accept defeat? Do you have an answer to this as well, Master?
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