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.

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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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Questions about dying

I have never heard of Cory Taylor, the Australian author who died of melanoma on July 5, 2016, until I read the excerpt from her last book, Dying: A Memoir in The New Yorker. I remember reading the excerpt about six months ago, mesmerized, and yet – or precisely because I was mesmerized – I have not even googled her name. I simply did not want to know more about her. The story she was telling was enough. It had its own twisted charm, some sort of magic that should have been left untouched.

I revisited it today. This time, I have bought an electronic copy of the book and read a little about her. I came across an obituary written by one of her friends, fellow writer Kristina Olsson, who beautifully expressed the feeling of “being robbed” prompted by death: “All the books Cory didn’t get to write, the books we won’t get to read, to hear her talk about. What they might have given us, revealed about us. The awards they might have won, the people they would have moved. An absence on our bookshelves and in our lives.”

While reading those lines, I could not help but thinking that the “absence on our bookshelves” could always be filled. Yes, none would probably match Cory or any other writer for that matter, but the bookshelves would remain filled by other writers who would move us in different ways. What about the void created by the loss of someone we love dearly? Could that be filled? A partner with another; a child with another; a parent with another? Even a friend with another? I don’t think so.

This was what Cory had to say about “questions for her about dying”:

“Yes, I have considered suicide, and it remains a constant temptation. If the law in Australia permitted assisted dying I would be putting plans into place right now to take my own life. Once the day came, I’d invite my family and closest friends to come over and we’d have a farewell drink. I’d thank them all for everything they’ve done for me. I’d tell them how much I love them. I imagine there would be copious tears. I’d hope there would be some laughter. There would be music playing in the background, something from the soundtrack of my youth. And then, when the time was right, I’d say goodbye and take my medicine, knowing that the party would go on without me, that everyone would stay a while, talk some more, be there for each other for as long as they wished. As someone who knows my end is coming, I can’t think of a better way to go out. Nor can I fathom why this kind of humane and dignified death is outlawed.”

“Yes, I’m scared, but not all the time. When I was first diagnosed, I was terrified. I had no idea that the body could turn against itself and incubate its own enemy. I had never been seriously ill in my life before; now, suddenly, I was face to face with my own mortality. There was a moment when I saw my body in the mirror as if for the first time. Overnight my own flesh had become alien to me, the saboteur of all my hopes and dreams. It was incomprehensible, and so frightening I cried.

‘I can’t die,’ I sobbed. ‘Not me. Not now.’

But I’m used to dying now. It has become ordinary and unremarkable, something everybody, without exception, does at one time or another.”

“Yes, I have regrets, but as soon as you start rewriting your past you realize how your failures and mistakes are what define you. Take them away and you’re nothing. But I do wonder where I’d be now if I’d made different choices, if I’d been bolder, smarter, more sure of what I wanted and how to get it. As it was, I seemed to stumble around, making life up as I went along. Looking back, I can make some sense of it, but at the time my life was all very makeshift and provisional, more dependent on luck than on planning or intent.”

“No, I am not unhappy or depressed, but I am occasionally angry. Why me? Why now? Dumb questions, but that doesn’t stop me from asking them. I was supposed to defy the statistics and beat this disease through sheer willpower. I was supposed to have an extra decade in which to write my best work. I was robbed!

Crazy stuff. As if any of us are in control of anything. Far better for me to accept that I am powerless over my fate, and that for once in my life I am free of the tyranny of choice. That way, I waste a lot less time feeling singled out or cheated.”

“I shall miss you so much when I’m dead: Harold Pinter, dying of cancer, speaking of his wife. I know exactly what he means.

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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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On remembering and forgetting. Or Cancer…

Last Sunday, the 4th of February, was the World Cancer Day. I don’t know how many of you have noticed, but if you are a regular user of Facebook or Instagram, you could not have missed it. You all receive those notifications, or “reminders”, as they call it, right? Remembering squeezed into a simple algorithm that acts as a God-like figure which tells you what to remember and what not to remember. Anniversaries, “happy friendship days” accompanied by haplessly cheezy messages…

I am sure some people find them helpful. Others, like me, hate them, trying to find efficient ways of turning them off for good – as you probably are already aware of, getting totally rid of them is not so straightforward. You turn off one; another pops up. You unfollow someone; it creeps back into your timeline via a “like” button pressed by one of your friends. Blocking is not an option either, for you can block people, but you cannot block Valentine’s Day, for instance. Or another important date that Facebook, the omniscient gate keeper of time and of our minds, thinks we “have to” remember.

But what is wrong with raising awareness with regard to cancer, I hear you ask. Nothing. Unless you are a cancer parent that is. If you are, cancer is your everyday reality. Equally, it is something you wish you could forget. I always think of French historian Ernest Renan’s fitting observation about nations when I see such reminders: “the essence of a nation is that all of its individual members have a great deal in common and also that they have forgotten many things … Every French citizen has forgotten St. Bartholomew’s Day and the thirteenth-century massacres in the Midi.” Cancer is the St. Bartholomew of those whose loved ones have to go through the ordeal of cancer.

I am of course aware that St. Bartholomew is a thing of the past whereas cancer is your present, your “here and now”. But the analogy is not too stretched, as cancer parents forget about the disease the moment their children go into remission. They never think it might come back; they deliberately make it a thing of the past; delete all traces of the suffering their loved ones had gone through to enjoy some sense of normalcy – however brief it may turn out to be.

If you do want to see what childhood cancer is like, however, and raise awareness, then I suggest you check and share the 4 year old Jessica Whelan’s Facebook page who passed away on 20 November 2016 after a two year battle with neuroblastoma. His father, a photographer, released the following picture when they were informed that Jessica had only a few weeks to live.

The black and white photograph went viral, leading some to question the appropriateness of making such an intimate moment public. Andy Whelan who had to face his own St. Bartholomew was unapologetic, and rightly so. His words are worth quoting in full (emphases mine):

“As a photographer it is important to capture the truth and the reality of a situation, too easy it becomes to capture the joy of life whilst discarding the torture that we see.

This is the hardest photograph I have ever made, it is in fact my own four year old daughter. A few days ago she was given what is most likely only a few weeks to live after a battle against cancer that has been waged for over twelve months. This photograph was made in a moment that we as parents could offer her no comfort, her pushing us away whilst she rode out this searing pain in solitude. This sadly, for us as a family, is not a sight that we see rarely. This is now a familiar sight that we see regularly through each day and night, its frequency now more often. This is the true face of cancer, my baby girls blood vessels protruding from beneath her skin, a solitary tear running down her cheek, her body stiffened and her face contorted in pain.

I could try and use a thousand words to describe this image that we as parents are confronted with on a daily basis but these words would fall short of truly depicting the sight we see. With this photo I do not mean to offend or upset, I do mean however to educate and shock those that see it in its context. Perhaps by seeing this photo people not in our position will be made aware of the darkness that is childhood cancer, perhaps these same people may be able to do something about it so that in the future no child has to suffer this pain, so that no parent has to bear witness to their own flesh and blood deteriorating daily.

The only apologies I offer are to those that know Jessica, I understand that this photo is hard to see and even harder to absorb. To those that do not know Jessica I offer no apologies, this is what cancer does to a child in their final weeks and days!!! Before her diagnosis I was one of those ignorant to the darkness of childhood cancer, not truly appreciating the hell that it brings. It would never happen to us! Now I give childhood cancer the respect it deserves, seeing too many children suffering this same fate and watching families torn apart.

If this photograph only serves as a purpose to make people think twice about this evil and put into perspective what it does to a child, then it has achieved its purpose. Research needs to be done, cures need to be found, too long now has this been allowed to happen.

Please I beg of you, as a heartbroken father, it is too late for my daughter, but childhood cancer needs to be cured. No family should have to go through this hell.”

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New update from Luca

Luca has had a great two months. For the first time in a very long time he has been completely free from pain and difficult side-effects. The team at Childrens’ Hospital Los Angeles sent us back home for Christmas and New Year’s. Even though he liked Los Angeles a lot, Luca had been missing home, his toys and friends, so he was very happy to be back. He was doing so well that we did not hesitate to send him back to school. The doctors in Lund were amazed; our friends here were amazed. It was as if he had never been sick.

Then it was time again for a short trip to LA for scans and check-up. We had some of the tests done in Sweden, but were not informed of the results. In any case, what mattered most was the full body scan (MIBG) he was going to have at CHLA.

Unfortunately, the results were disappointing for both his doctors and us – even more so considering how well he was doing. The tumours were all there; in fact, a new one was discovered, though his doctor in LA believes it may have been there all along, just not visible on the first set of scans. There was no way of making any exact comparisons; the tests he had two months ago were deficient due to technical problems. We knew that the tumours were not growing, at least not as fast as before, but we found out that they were not shrinking either. In other words, Lorlatinib was doing what chemo did over the summer, i.e. keeping the disease in check, stable. So far at least, it was not curative.

Now we are back in Lund. Luca is still doing fine, and back to his normal life. We are still “cautiously optimistic”, though perhaps more on the cautious side of the equation. We knew even before the trial began that the problem with drugs that target ALK mutation is “resistance”; the tumours adapt to them and stop responding. Lorlatinib was specifically developed to overcome this problem but as we wrote earlier, there is so much we don’t know about it. And we learned that the response of the children who are on the trial is “mixed” so far (a very short period of time to be scientifically meaningful to be sure), with some developing resistance after just a few weeks.

While we keep hoping and praying that these good days will last, we decided to raise the alarm level to yellow and to have a plan B. If the worse were to happen, we won’t have much time to act. Needless to say, we will not stop fighting until our hero, our little ninja stops fighting. His doctors in Sweden have already made it clear that there is nothing more that they can do for him here, other than palliative treatment. However, we have been in touch with Hospital Sant Joan de Déu in Barcelona, which has started a trial with the new type of immunotherapy that was once recommended for him at Sloan Kettering, New York. They have accepted to treat him if we were to find out that he starts progressing on the current treatment. The costs of treatment in Europe are much more reasonable than in the US, but we have already used a big chunk of our funding in Michigan and Los Angeles. In case there is an unfortunate turn of events, we may need to relaunch the fundraiser and try to take him to Barcelona.

Until then, we have nothing to do but to continue hoping that the miracle lasts. And as always, we need your prayers, good will and energy. They brought us so far; we are sure they will take us further.

http://lucacan.com/still-ok/

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One day at a time

Imagine you’re an obsessive compulsive person. Dedicated, disciplined, somewhat rigid, disturbingly perfectionist, with a huge aversion to uncertainty. Of all kinds. You hate uncertainty in your personal life, in your work life, everywhere, under all conditions. Life has always been particularly difficult for you since life is, well, full of uncertainties! Worse, you are aware of this. I mean, you know you cannot control external circumstances, yet you still strive for certainty. As much as possible that is.

Then a monster finds your loved one. The monster is called cancer and the monster is unpredictable. Even his name or true nature eludes the doctors. For almost two weeks. When they discover who the monster is, they look into what it can do. But before that, they call you to a meeting, the very first meeting after diagnosis, and tell you a sentence which is supposed to become your mantra for God knows how long: “One day at a time”.

One day at a time? To a control freak parent? To someone who has spent half of his life trying to make things as predictable as possible? And not on some random subject – the most important thing in your life so far.

When will you start the treatment? What will you do? What if a, b, c happens? The doctors, all so patient, reply: “One day at a time!”. You want to scream at the top of your lungs, “But one day, each day, is an eternity! How do you want us to cope with eternity?” They know your suffering. They see through your eyes. You don’t need to scream when you are with them. Because they’ve already seen so much suffering. They’ve dedicated their whole lives to end or at least lessen the suffering. In the case of this monster, not so successfully.

Then the monster is beaten. So you think. No more one day at a time. Days become normal; the future loses its heavy meaning. The present becomes the present, not pregnant with questions, fears and expectations. You start living again.

But the monster comes back. It throws a smile at you and says “I’ve been here all the time. You think you can beat me?” It brings one day at a time with itself. With a vengeance, as relapse means uncharted territory. There are options, but not enough information. No one knows which is best. You have more questions this time and yet they have fewer answers. Sometimes not even one day at a time is enough of a reply.

Finally, you learn. Navigating in uncharted territory teaches you the meaning of “one day at a time” because most of the times, this is all you have! No future, no past. Even the present is squeezed into hours, minutes… You have to do your utmost with what you have. If it is a day, then it is a day. If less, then less.

You learn of course. But you never get used to it. A gigantic caterpillar in your stomach. The void…

 

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Guilt by association

The first, and possibly the longest lasting, feeling of a cancer parent is “guilt”. Shock, anger, pain, desperation are all there; they come and go like tidal waves, but guilt, of different shapes and sizes, never leaves you.

First, you think you are responsible for your child’s cancer. Maybe it was genetic; maybe it was something you did during pregnancy. Experts tell you immediately that this is not the case with most childhood cancers, definitely not with neuroblastoma. The only statistically insignificant correlation is if you have childhood cancer in your family. Neither his mother, nor I did. In any case, even if we had it, it would have been irrelevant, scientifically speaking. Young kids, i.e. babies, develop cancer usually when they are still an embryo. One gene goes awry, that’s all! Chances are one in a million so far as neuroblastoma is concerned. But that 1 (ONE) is everything to you. Like the other numbers you will learn to value, such as the prognosis, the odds of survival with this or that treatment..

When your rational mind takes the control back, the irrational hits back even more forcefully. You become superstitious: what if all of this is happening because of some mistakes I made in the past? Could this be some sort of divine payback? Rationality does prevail in the end, though not before you go through several sleepless nights.

But guilt works in mysterious ways. There is the guilt which makes you think “Am I taking good care of him? Could I have done more? Should I look for more options? What can I do to calm him down when he is in pain?”.

Then there is guilt by association – I wish I had a better term. You want to take his place; you want to become sick in his stead. You feel it is as if it is your mistake that the monster has chosen him and not you.

And the worst kind of guilt. What if things really go wrong? What if you have to make that “fateful” decision? Should you pursue other, alternative, avenues or… We’ve been there once. We’ve survived it; he’s survived it. I don’t know whether I can survive it again…

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(Autumn Sun, Egon Schiele)

The burden of human suffering

Don’t try. You cannot even begin to understand. The “overwhelming burden of human suffering – disease, mutilation, grief, age and death” that Benedict Anderson so aptly described, the inability to come up with a straight answer to the simple yet agonizing question “why him?” are not things that could be grasped vicariously.

For us, however, this was reality. A reality that struck our minds the moment we entered Ward 64 and saw the worn out face of a tall man carrying half a meter long baby fed through a nasal tube. We still didn’t know what we were walking into. A day later it became clear that we were walking into a “new normal”, where nothing is normal. A so-called normal which consists of tubes, syringes, sophisticated scanning machines, poisonous cures (indeed, an oxymoron), physical pain, exhaustion, fear, desperation, well, all that makes up “the overwhelming burden of human suffering”. What is worse, you are not the subject of this new normal. An innocent 11 months old is; you are simply an ill-fated onlooker.

So why are you surprised that I am angry? That I am bitter? Cynical? Even self-destructive? How does one cope with such a brutal reality that is not even his? I make mistakes, yes. Big ones indeed. I hurt people. More than that, I hurt myself.

Am I punishing myself, feeling irrationally guilty – believing that this has happened because of me? Perhaps he is paying the dues that I was supposed to pay? A relic of this or a past life. Or am I too harsh on myself?

Maybe you are too harsh on me (the generic you, lest be misunderstood)? How do you expect me to live like you do? I know that your lives are not easy either; that everybody has issues, some bigger than ours. But what is the point of comparing? This is my “normal”, that is yours. I cope with mine in certain ways; you do with yours in other ways. Some work; some drink; some do drugs; some fall in love; some simply run away. But we all make mistakes. One way or another. And we pay for them. One way or another. We are not exempt from the rules that are binding over others.

Should we pay for them “forever”?

How on earth could you think of accusing me/us of using our predicament to seek redemption? As an excuse? As an explanation even… This is our condition; we live and breathe in it. We cannot survive outside it. We cannot spend a moment without thinking what is going to happen the next day. And you’re wrong, we cannot always cherish the good moments while they last without reflecting on tomorrow.

You want to help? Don’t judge!

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(Benedict Anderson in Amsterdam, ca 1958)