My life with Vincristina

This is the story of the decline of a malignant growth. Most such tales are the product of the sufferer's preoccupation with his own condition. I suppose that is true of the present one as, rather sadly, people like me have a penchant for being self-obsessed. But it is also the story of other people's personalities, and in particular of the relationship between doctors and their patients. Sometimes, a major illness can be a rich and rewarding experience, at least in terms of the human contacts it develops. Much depends on what the final outcome is.
San Casciano, Saturday 6 April 1996. Today is a teaching day. I get up early but when I go into the bathroom to shave I find that there is a lump in my neck, which is swollen to the point that my collar will not button up. As the course is a medical one, later in the day I am able to show this odd phenomenon to my doctor colleagues. Their professional curiosity is aroused. The first one prods and pushes at the growth while a room full of students looks on dumbfounded. Then the others come over and take it in turns to feel my neck. "You should get that investigated", they say. One of them murmurs that it is probably tubercular. Tuberculosis? What a mediaeval affliction! I almost feel proud of myself.
Florence, the following week. Professor Mario Fanfani is not a person, or not any more. He--or it--is a medical business, and a very lucrative one. Armed with a prescription from my doctor I walk through the door of his clinic in Piazza dell'Indipendenza and the receptionist stamps me out a plastic card with Professor Mario Fanfani's logo and my name on it, and this becomes my passport to the world of private medicine. The walls of the clinic show that Fanfani has a penchant for collecting paintings by the renowned Apulian maestro Renato Guttuso, but he clearly doesn't want them on the walls of his own villa: better to impress his clients with them. Is he perhaps a Philistine masquerading as an art connoisseur?
The wheels of private medicine are liberally oiled with money, and so the results of blood tests are always available at the end of the same day on which the samples are taken, whereas the public hospital provides them ten days later. However, I find otu that the slow, parsimonious ways of social medicine are preferable to those used by Fanfani's harassed laboratory serfs, for the public hospital will redo any analyses that it is unsure about, while at Fanfani timeliness overrides all other concerns, including accuracy. This is the first of my many encounters with the syringe, which the latex-gloved hand stabs around in a fruitless search for the vein in my wrist.
Fanfani's crisp, scientific-looking folder of results comes in like clockwork at the allotted time in early evening. The 36 blood tests are all over the place. It means hospital.
Careggi General Hospital, 6 May 1996. The needle goes into my rear end with a sharp stabbing motion and hot serum flows out if it. My family dwindles away from sight, and I lose consciousness in a matter of seconds. Hours later when I wake up my neck is shrouded in bandages and there is a plastic sack full of drained fluids taped casually to my chest. Some of the feeling in my neck has gone and it will never come back again, for the surgeon has cut through the nerves in order to take the sample for biopsy.
In La Specola museum in central Florence there is the world's greatest collection of anatomical wax-works. These were made between 1750 and 1840, when dissection was, to say the least, frowned upon. The wax-works got over the problem of finding dead human subjects exactly when they were needed, especially as these were difficult to conserve without refrigeration. Most of the exhibits are body parts but several are full corpses. One is the pallid, yellow cadaver of a beautiful young girl, with real hair and nails, an object redolent with pathos and a stark reminder of nearness of death in people's lives during the 1700s. The waxworks are so brilliantly executed that it is very hard to see what distinguishes them from real cadavers. How, I wonder, did the authors of these devilish masterpieces manage to complete them before the corpses they were based on decayed away? The dissections they modelled were clearly works of surgical genius. But what fascinates me most is a severed head and shoulders. Beneath a deep gouge, and with the skin folded back in neat flaps, the structure of the human neck is revealed in all its astounding complexity. I suspect that if I had had such a clear idea of what was involved I would not have allowed Professor Gallina to plunge his knife into my neck.
Careggi, 12 May 1996. The results of the biopsy have been given to my friend and fellow Professor Sergio Boncinelli. I meet him in the street outside the maternity ward where my son was born. Oddly, he leaves me standing and walks away to discuss something with a colleague, deliberately turning his back on me, which is not usual in a person like Boncinelli who seems to delight in introducing people to each other. He shepherds us inside and wanders around in search of an empty room, again an uncharacteristic way of doing things. We sit down and he looks at us for a long time. Clearly he is trying to say something, but it does not come out. Curiously, this man with more than three decades of experience of medicine, who directs a ward for transplant patients (of whom one in six dies), does not know how to break the news to me. Eventually, with evident uncomfortableness, he says "It's lymphoma." In even more stilted tones he adds, as if it were an edict from the King of Spain, "You can cry if you want to." Rather than cry I am simply too amazed to reply. As we walk out I feel something that must resemble the proverbial 'unbearable lightness of being'. Never once am I afraid of dying: I leave that to those around me, and some of them are terrified of it.
Haematological Clinic, Careggi General Hospital, Florence, 22 May 1996. Giampiero Bellesi is a cancer specialist and the perfect doctor. He balances clinical precision with a breezy bedside manner that sends his patients into ecstasy. This senior oncologist, who inspires fanatical loyalty on the part of the people he treats, has mastered the art of telling a man he is going to die. It is a very great skill and not to be despised: he injects energy and hope into people who have only the bleakest chances of survival. Fortunately, this is not my case.
Bellesi rests his foot on my bare behind. Out of the corner of my eye I see a well-polished brown brogue shoe pushing away at my buttocks as he stiffens his muscles. He chats breezily about the superiority of American surgical steel over its Italian equivalent. A spray of anaesthetic and then in goes the needle, all 15 centimetres of it. Thanks to the spray I do not notice it in the soft tissues, but bone cannot be anaesthetised and so I feel it part my pelvis and finish with a clunk against the wall of the cavity. Out it comes and I breathe a sigh of relief that it has not snapped. Bellesi squirts cloudy, blood-streaked bone marrow onto glass slides, still chatting amiably. How grey and dirty the marrow looks.
Outside, I walk with a slight limp as the hole in my pelvis aches (occasionally it still does). We wait for a no. 14 bus and when one comes we climb aboard. After us, a lady and her son, aged about 22, clamber up. The son grips the handrail and slowly licks the front windscreen of the bus, muttering incomprehensibly. His mother gently steers him away. I forgot that the Haematological Clinic is next to the Mental Health Unit. The tenderness and solicitude of the mother with the son, the adult child with the ruined brain, is deeply touching. I wonder how many selfless acts of heroism in the face of great adversity are performed by the most ordinary people entirely unnoticed by the rest of us. Ordinary life has more drama than the movies.
When it arrives a few days later, the laboratory analysis of the bone marrow is so full of medical jargon that I find it quite incomprehensible. Bellesi puts on his glasses, reads it and mandates a full course of treatment: the heavy approach, tough but effective, he says. Regime--one week a month until the blood tests improve and the swelling is gone.
Haematological Clinic, Careggi, 8 July 1996. We start with an early drive through the deserted streets to Careggi. The blue sky and leafy freshness of a summer's morning that will gradually become stale under the relentless onslaught of the sun. The clinic is heavily perfumed with rubbing alcohol, a smell I will always associate with chemotherapy. The other patients are an odd assortment, young, old, middle-aged. They are too uncertain of themselves to make instant friendships, but we are all in the same boat, and it is gently sinking. Next to me is D'Alessandro, who is a stocky sporting type, about 40 years old. He is a Stage 2 patient with growths in more places than my solitary swelling. In three months I will see him reduced from an energetic tennis player to a physical wreck.
The nurse brings me a giant syringe filled with half a litre of scarlet liquid. I will grow to hate and fear this chemical, which the patients nickname "the red devil". As it is injected into my arm I imagine it changing the colour of my blood. But in reality the culprit is Vincristina, the product of a plant grown in Ethiopia, a colourless liquid. As it makes me better it will simultaneously destroy nerves in my hands and feet.
The nurses are young and moderately pretty, a fact that they quite rightly conceal beneath a demeanour of professionalism. We men are biologically programmed to look at them with appraisal and interest. In reality, as they bend over us to inject the chemicals or adjust the saline drip, and we look right into their cleavages, ours is the attitude of the frightened small boy, who yearns for the safety and comfort of his mother's bosom. This is a very noticeable fact, and it disconcerts me that I can both feel it in myself and observe it in my neighbours.
Next to D'Alessandro there is a reserved man who looks uncomfortably like the Prime Minister of Italy. Illness has made this man is far thinner than the Head of the Government. He is very tall and his beige linen suit hangs on him like a limp sail on a ship becalmed in the doldrums. I take an irrational dislike to this poor individual, presumably because of his resemblance to the P.M. I shall not see him much more.
The next day, the first dose of Vincristina induces violent vomiting that lasts all night. There is a solution and the National Health Service pays for it: six pills that control the nausea. Each one of them costs the equivalent of a three-course meal. In a few days Vincristina will wash the enamel off my teeth and make them ache. I am taking twelve times the normal maximum dose of steroids and it gradually alters my consciousness and appetite: ravenous desire for fried fish at three o'clock in the morning. Racing intellectual productivity: I write a whole book in a month under the influence of cortisone, but when it comes out four years later it does not sell many copies. I dedicate it to my six doctors.
For the month of July we move to Bivigliano, north of Florence. Here, the leafy slopes of the central Apennines are damp with dew and cooled by the mountain winds. On top of them is an ancient monastery and I like to go and lie on my back on a pew in the chapel, to look up at the Baroque ceiling, on which white putti are intertwined with hoops and foliage. To my mind it is the most perfect union between the exuberance of the Baroque and the sober, elegant artistic traditions of Tuscany. The pervasive air of calm on Monte Senario and in nearby Bivigliano are comforting.
Bellesi says that the chemicals restrict the supply of oxygen to the blood and kill the malignant cells. Boncinelli says that I must get lots of exercise in order to oxygenate my bloodstream. Doctors!
But I love to walk up the stupendous Via Crucis from Bivigliano to the Monastery, under the whispering fronds of the pine forest, past the small stone-walled graveyard of the monks, across the broad, inclined fields of brilliant green grass littered with tiny flowers, to a bench at the top of the path, where one can rest and look down the crease of the valley to the whole of Florence laid out in the distance, with Brunelleschi's dome to concentrate the eye in the centre amid the haze. It is a fairytale view and always entrances me. However, this time half way up the path I find I have only two heartbeats out of five. I am uncertain what to do. When I tell them at the hospital they tell me that I should have called an ambulance. As there were no mobile phones at that time, that would have been a difficult thing to do half way up a mountain path.
Later in the month I go bald. It happens in 20 minutes when I wake up one morning in Bivigliano. I raise my head from the pillow but most of my hair remains behind. The rest falls out when I comb it. The only sensation I feel is one of vague disgust. This is heightened because at the same time I also lose my beard and pubic hair. Carnal instincts become a mere memory, as my private parts feel as if they have been stamped upon heavily. The whole thing is rather like a second life, a grotesque mirror-image of the first one. As baldness is the most visible sign of a cancer patient, people tend to regard it as the most dramatic part. It is not. Nevertheless, when people I know look at me, some show bewilderment, others compassion, and all that is generated by the baldness. Perhaps this is because at the time baldness was not considered fashionable. As a present I am given a hat, which I grow to detest.
Haematological Clinic, Careggi, 5 August 1996. The third session of chemotherapy is the most testing. I honestly think that if there had been a fourth session I would not have had the reserves to cope with it. The panicky sense of revulsion for the huge syringe of scarlet liquid is based on a visceral desire not to have such stuff polluting my veins. By now these are heavily marked by the fumbling of nurses and paramedics who have striven unsuccessfully with the needle to skewer the vein. I am irritated by the shyness of my blood canals.
We patients are following different individual protocols of treatment and so the clientele has changed in the room of the clinic where there is a semicircle of surgical chairs, each with its pole and suspended, upturned bottles. Only the pervasive smell of rubbing alcohol remains constant, lingering and unaltered.
D'Alessandro is still there, less bright and communicative, worn down by the pain and degradation of his treatment. Next to him is Raffaele, a man in his sixties, who calmly informs us that he has a 20 per cent chance of survival. He is gentle and resigned and we feel anguish for him. This is his third attempt to beat cancer: the other two failed.
The circle of patients has little to say about its treatment but much more to recount about the problems of daily life. One is a lady who is trying to carry on with her job nursing in a rest home and caring for old people. She has no need to dramatise the problems--none of us has--and they sound terrible. Next to her is a young girl, badly overweight and with her baldness covered by an ill-fitting knitted cap that keeps falling off. She is 18 years old and lives with her family above a distillery. The distilling produces tremendous heat, which cannot be easy to manage for a person who is so manifestly ill, for it is midsummer and the normal midday temperature is 40 degrees. Dispassionately, she describes her home life (how odd that chemical treatment has shorn us of any desire to talk up our predicaments). It is clear that she comes from a family of urbanised peasants, ignorant to the point of perfidity, who clearly have no idea how to look after her and are as rude as they are brutal. The nurse attaches her medicine to the pole and plunges the needle into her arm. In the bottle is a foul, dark blue liquid that slowly drains into her bloodstream as she talks.
Bellesi's Office in the Haematological Clinic, 2 September 1996. I am trying unsuccessfully to steel myself for a fourth round of chemotherapy, but to my relief Bellesi says it is not necessary. Made unsteady on my feet by an immense sense of liberation I go to Castiglioncello al Mare and stay in the large pink villa with the venerable palm trees and tatty, overgrown garden. It is sandwiched between the Via Aurelia and the Tyrrhenian Sea. Within hours of arriving, the weather, usually excellent in early September, turns cloudy and it starts to rain. With no immunity, I get influenza. For days I cannot eat, drink or sleep. Food and water taste like vile poison. I lie awake and listen to the ding-ding-ding of the bell that sounds when the level crossing barrier comes down on the nearby railway line. I count the number of trains per hour and am amazed that so many pass between one and two o'clock in the morning. In the end I faint in the bathroom. It is a very odd sensation. The blow on the skull as it hits the floor is almost comforting, as it stops the sound of devils chattering and high-pitched whining which sounds as if someone has been trying to jam a radio station.
Eventually, after a week of ineffective visits from local doctors, I am judged well enough to be moved back to Careggi. We use the car as a makeshift ambulance and I lie flat in the back of it looking up at reflections from the road. I am just about lucid and am amazed, and touched, that when Bellesi sees me he goes white with apprehension. More cortisone and the comfort of my own bed. It is like slipping back into the womb. Nothing seems to matter any more.
Cancer patients are never cured, but they can live happily in remission. The confirmation that I have reached such a point comes from the computerised tomography. I have become quite used to sliding backwards and forwards under the white revolving doughnut with the laser in it, while an earnest, pre-recorded female voice tells me to hold my breath or let it out.
The recovery. In October 1996 I speak at a seismological conference in Udine. It takes some nerve to make the journey and I find I have lost much self-confidence. But it goes quite well and people are understanding about all the appointments I have missed over the summer. Surprisingly, they are too at the University of Massachusetts, from which I have been on sabbatical for a year and medical leave for half of another.
The recovery of my ability to work is one thing, but the other is the recovery of my body. The illness has been entirely free from pain--just a gentle swelling. Bellesi says it would have killed me in ten to fifteen years, with huge swellings in most of my lymph nodes. The cure is another thing entirely. It leaves me wondering whether it is worth it and what to do next, so I decide to try some alternative medicine.
This involves some dashes across the Apennines and along the A1 to consult D'Amante, a guru of alternative treatments, in his clinic in a leafy suburb of Parma. As is common with such people, D'Amante likes to cultivate the hey-presto, gee-whizz air of a doctor who knows something that most of his colleagues do not. His first comment is that in my case chemotherapy is like the man who clapped his hands to drive the elephants away, and when people tell him there are no elephants in Italy he says that it is because he has frightened them off. It is not a convincing metaphor, but it leaves us with the lingering suspicion that orthodox medicine has gone unnecessarily far.
It soon becomes clear that D'Amante was a disciple of Di Bella, a man who a couple of years later rockets to fame when people start to suggest that he is able to cure cancer with liberal doses of Somatostatin. I take this substance in spoonfulls from a jar in which it is laced with antioxidants, and the whole concoction tastes disgustingly like axle grease. It does not seem to do any good, but that is the dilemma of alternative medicine: if one's condition improves there is no way of knowing which treatment was responsible or whether instead the body decided to get better on its own.
The Di Bella case was an interesting one that led to the waste of a vast amount of public money. The man was meek and financially badly off to the point of appearing like a latter-day saint. Indeed, it was Catholicism that ensured his fame, largely through adroit use of analogy. Desperate patients camped outside his clinic, a modest apartment in a run-down suburb of Modena. People swore affidavits that he had cured them of incurable growths. The Minister of Health decreed a half-year of experimentation with Somatostatin in the country's hospitals and the stock-market quotation of the company that produced it soared. A commission of foreign cancer experts came to Italy to investigate and went back saying there was nothing in it. Some of the patients treated with Somatostatin died for lack of conventional therapy and gradually the whole matter fizzled out in a welter of recriminations and counter-recriminations. Di Bella's son, also a medical doctor, went on television to say that the country's doctors had sabotaged the Somatostatin experiments, but by then the magazines and newspapers had tired of putting photographs of his father's noble, silver-haired head on their front pages. It was not only a sudden surge of Catholicism that turned this mild-mannered doctor into a celebrity, it was public disquiet about the conspicuous wealth and rapacity of conventional doctors, with their Ferraris and all-year suntans. I toyed with the idea of abandoning chemotherapy and turning to the alternative treatment, but frankly the risks seemed too great and the rewards too uncertain. Somatostatin is now decidedly out of fashion.
I did, however, visit a homeopath in Bologna. His name was Dr Amato (why, oh why, did they all have names connected with love and beauty?). He was a reserved, professional man, with a firm but gentle nature, who prescribed me phials of arsenic to inject into my belly. I became quite adept at plunging the needle into my soft tissues and rapidly squeezing the liquid in. I have no idea whether it did any good and in any case when I returned to the United States it became impossible to procure the syringes: by an absurd anti-narcotic law, they are not for sale in the pharmacies of Massachusetts.
And so, gradually, it all ended and good health returned. The chemotherapy has left me permanently weakened. My hair grew back, but thinner than it was. Once a year I see Bellesi and breezily he talks about food and wine, children, politics and religion as he sounds my armpits for swollen lymph nodes. Now in his mid-sixties, he remains the perfect doctor, radiating good health and bonhomie. And the most constant part of the whole saga has been his chicken-scratch writing, a source of infinite perplexity to pharmacists and hospital workers. It is a privilege to know him.
The formal end came at a dinner we organised for all my doctors in which I tried to thank them for saving my life and choked with emotion on the speech, to everyone's embarrassment. The advantage of working in a hospital is that, although I have no medical qualifications, there are plenty of colleagues who do, such as Guglielmo Consales, who anaesthetised me for the operation and is a good friend whom I see socially. I shall never forget one moment when I walked down the corridors of Careggi with five of my doctors following me in a phalanx of flapping white coats. It was pure gold.