The story of Salva

6 December 2019 1 By Roberto Pugliese

My husband Salva was a good man. It is the first thing that comes to my mind to describe him. He was an intelligent and sensitive man.

It all started in the spring / summer of 2011. All the sudden became quick-tempered and often unreasonable, he had sudden outbreaks of anger and intensified headache attacks. He had always suffered headache and for this reason this symptom was undervalued.

During the summer we were traveling in the United States with my son and a group of friends, with long daily car journeys.

He persisted in driving, though tormented by these strong headache, which dulled a little with the painkillers, but then returned, insistent, pounding. I realized that at times when driving he seemed disoriented, he had difficulty never noticed before, but if I proposed to give him the change he got angry, he verbally attacked me like never before.

On the last night, in Las Vegas, he got lost in the hotel, in the sense that he could no longer find our room.

The return air journey was a hell for him. He was wrapped in a blanket with this strong headache.

Once in Milan he agreed to let me drive to return to our city, Genoa.

The morning after, we went to the doctor. Simple cervical, was the diagnosis. A bit of Muscoril and Novalgina and it will pass.

The night he fell into a state of absolute spatial and temporal disorientation and he was going mad for the pain.

I called the ambulance and at two in the morning a PS doctor said to me with annoyed tone that you don’t go to the emergency department for “a simple headache”. I got angry, I demanded an immediate neurological examination, which was performed by a young doctor.

I was called after half an hour, the doctor said that he had noticed “a suspicious nuance” in a test performed and that he wanted to resort to caution, to perform a TAC the next morning.

I went home in a taxi with a sense of oppressive anguish, that thought that there was something serious.

In the morning after a cold shower. Following CT and subsequent urgent MR I heard for the first time a name never heard before: glioblastoma in the right occipital lobe, diameter 6 cm.

I didn’t know what it was, they told me it’s an aggressive tumor, her husband is serious, it’s not transportable, it can go into a coma in a moment, but it’s in an operable area of ​​the brain.

The world turns upside down, the world collapses, I feel I am missing.

Supported by a dear friend which was a primary in that hospital, we called the neurosurgeon, who is on vacation.

One of his assistants receives me and Salva’s brother, without saying anything shows us the images of the RM and said: “look, this is the brain of your husband. Six months of life whiteout surgery, 10-12 with neurosurgery followed by chemo and radio “. I see it, my husband’s brain, mostly occupied by something that looks like a spider. And I faint.

I then return to the room from Salva, who in the meantime, “bombarded” with cortisone, was feeling better.

He tells me “I have cancer, right?” Lucid and determined, as always. He says “I’ll fight, don’t cry, we’ll make it.” But promise me never to lie to me, I want to be informed about everything.”

I miss the words, I lack courage, I miss everything. The only thing I can say is that we can do something about it and we will succeed.

Relatives and friends rush to the hospital, the primary of neurosurgery comes back two days later from vacation and looks like God. He is very sure of himself, even if to me he clearly says that the operation itself is practically “routine”, but that there is no it’s hope of long-term survival.

During the operation my friend primary of another department informed me that he was able to enter the operating room. He updates me every half an hour, he tells me that the result of the histological exam says “degree 2/3 astrocytoma”. I rejoice in the hospital courtyard, it seems to me a very good thing.

But when the neurosurgeon reaches us, he takes away all reason to smile.

In his opinion it is a glioblastoma, the sample taken and analyzed was very external, the morphology and extent of the damage shows clearly that is a glioblastoma. But anyway, he says, I took everything away.

My husband woke up well after the surgery, he was euphoric.

After five days, we returned home, and he tolerated well the radio and chemio cycles.

Until one evening he felt bad. It was Saturday, we ran to the emergency department. Immediate CT scan, but they don’t tell us anything. They park my husband in the vascular surgery department, because there is no space in neurosurgery.

The next morning the primary doctor arrives, Salva and I stand in the corridor, he is better. He tells us “it is an early recurrence, I did not expect it, we will re-operate”. I ask him if it could not be a remnant of a tumor not removed during the operation (I read it in his medical file, he hadn’t mentioned it) and he denies it flatly and dryly. And he goes away.

My husband bursts into tears for the first time since I know him, he sobs desperately and I feel petrified. I can’t cry, I’m in a bubble.

I speak with the neuroradiologist, the only human person I trust now in that hospital. He tells me, escaped from here, the intervention was not radical.

Let’s run away. We escape first to Bologna, then to the Besta in Milan. There we finally find clarity and humanity. It was not a recurrence, but of residue and, for the moment, “stopped”.

They prescribe a RM per month, ready to intervene at the first sign of change.

And, the signal arrives. It is May 2012, Salva is operated by a young and smiling neurosurgeon, Dr. Cecilia Casali, who will become our main doctor and human support.

10 hours of operation, insertion of gliadel. He informs us that he could not remove everything, but that the residue will be destroyed with the cyberknife, which will be done in three sessions a few months later.

Second-level chemio with photemustine begins, because Salva’s glioblastoma is methylated but does not respond anymore to Temodal.

I learn to make the medications, we go up and down from Milan, but Salva is well, he fights, he works, he is proactive, he also organizes some trips. Let’s go to Venice, let’s go to Amsterdam. But the darkest nightmare hangs over us.

Every day is a new day, and no one knows how it will be. Every day I wake up with fear. I know that Salva has hell inside, but he continues to work.

His vision problems after the two operations get worse, so he cannot drive anymore. He often travels for work and takes the train.

Every time I accompany him to the station and see him walking towards the tracks with his step, always a little more uncertain, my stomach knots. But when he stays home he is a caged lion.

At the beginning of 2013 the situation worsened. Dizziness, tiredness and new deterioration in mood are becoming more and more frequent. Diabetes takes over, due to high doses of cortisone.

In March, the resonance reports a recurrence, which is also boundless in the right temporal side.

Third intervention, 8 April 2013. Dr. Casali had warned that a walking problem could also occur. They use 5ALA, a substance that, taken just before entering the operating room, has the function of “illuminating” the diseased cells, facilitating the surgeon in their removal.

After 12 hours of intervention, Salva is taken to the room, manages to avoid resuscitation.

The next day, he walks. We are all stunned. But the relief does not last long. Worrying symptoms, disorientation, headaches occur.

All possible analyzes are done, but they do not report ongoing infections, suspected instead by Dr. Casali.

After more than twenty days of hospitalization we return to Genoa, but in a few days the situation precipitates and requires a new hospitalization in Milan, which will continue for over a month and a half, during which an intraperitoneal shunt is inserted because a ventricle does not work any more, and the drains don’t have any effect.

Salva also has a pneumothorax, which is resolved in a week of intensive care unit.

At the end of all this, Salva lost the use of his legs and, now in a wheelchair, he was accepted into a rehabilitation institute in Genoa, where he arrived discouraged and angry with me, because I hadn’t let him go home. It is also inappetent, it does not feed, although I try to procure the foods he loved.

After a few days I arrive to give him breakfast (or, at least, to try) and I find him in a semi-unconscious bed, all smeared with feces and urine and above all with his skull swollen abnormally.

I call Dr. Casali on her cell phone, who in a flash organizes urgent ambulance transport escorted by the police to avoid traffic in Milan.

New hydrocephalus, copious loss of liquor. Another shelter, but the situation continues to fall, together with our hopes.

Salva begins to hallucinate, lack of appetite gets worse, becomes more and more intractable. At the end of June he still gets to go home.

I organize myself to find help (unfortunately the work forces me to stay away from home during the day) and a home physiotherapist.

Slowly he seems to recover, to the point that he insists on organizing a week in the mountains in August, with me and my brothers-in-law.

So we spend a few days in Trentino, but soon he loses interest and wants to anticipate his return.

The situation gets worse again, I struggle to get it to eat, to take drugs, to clean it.

He soon becomes incontinent and this is the umpteenth humiliation he must undergo.

At the end of October the control resonance reveals the worst. Strong tumor infiltration in the corpus callosum, tendency to hernia uncale. The last battle is lost, nothing can be done anymore.

For the first time I chin, I tell him that the apparent deterioration is due to necrosis. Maybe he believes me, maybe not.

In the last period I lose a little piece of him every day, which closes more and more in silence, perhaps he is detaching himself from the world, I don’t know.

On December 17th I am warned by a house that he cannot swallow and his fever is rising.

I call Dr. Casali, I run home, the fever rises to 41. It doesn’t even go down with the Rocfinfin and tachypirina, we get an oxygen tank, in an attempt to help him breathe, but I can’t keep the promise I made him, to always stay at home.

At three in the morning I call an ambulance, the oxygen tank does not seem sufficient, I fear that he will suffocate. He dies the next morning, in a bed at the hospital, in silence. This is his story.

Six years have passed, but anger and pain do not pass even if life is resumed. Life goes on, as he would have liked.

I try to learn from his great teaching of strength and courage, but in reality fear has remained. The horror has remained, the regret will remain forever.