Cancer in a time of crisis

The story of a Venezuelan man’s fight against cancer in a country lacking some of the most basic medical supplies.

Magazine-DO NOT TOUCH//Ricardo 1
Ricardo's brain surgery in April left him with a scar on the right side of his head [Alejandro Cegarra]

With barely any wrinkles, Ricardo looks younger than his 52 years. He is sitting in front of his home computer in San Antonio De Los Altos, a satellite town 18 miles from the Venezuelan capital, Caracas.

The left side of his head is visible and nothing, apart perhaps from a too-short haircut, is immediately noticeable. But there is something in his movements – they are slow and cautious, as though he’s protecting some kind of treasure hidden deep within his body – that suggests all is not quite right.

Then he turns, and the scar that divides his head in two, running from the base of his skull to the top of his cranium, is revealed.

It’s the result of his most recent surgery.

Ricardo had a brain tumour removed in April. His doctors say it was recurrence of a tumour he previously had in 2010.

Dealing with tests, doctors and medication was a bitter pill five years ago, Ricardo says. But this time around it’s even worse.

“You can hardly find anything in Venezuela nowadays. It’s a feat,” he explains. “And it’s also a feat how doctors work. Some tell me they work with their intuition.”

Ricardo has been unable to find some of the medication he needs in Venezuela [Alejandro Cegarra]
Ricardo has been unable to find some of the medication he needs in Venezuela [Alejandro Cegarra]

According to the Venezuelan Pharmaceutical Federation, the country is suffering from a 70 percent shortfall in medicines this year. Between 40 percent and 60 percent of its drugs and medical supplies are imported – and those made in Venezuela require raw materials that can only be found overseas.

But the country’s exchange controls mean companies must get permission from the government in order to obtain US dollars to import goods. And the Federation’s figures suggest Venezuelan pharmaceutical companies are owed as much as $3.5m from the government.

The resulting shortages affect everything from basic medication, such as ibuprofen, and gauze, to specialised medical equipment and supplies.

Round one: The thing

There is something different about a Venezuelan Christmas. Perhaps it’s the warm weather, the clear, blue skies and the traditional festive food: Hallaca, ham bread, chicken salad and hind leg.

Just as he did every December, Ricardo went to the supermarket to buy the ingredients for the hind leg recipe. It was 2009.

As he was standing in line, waiting to pay, he was gripped by an intense pain in his groin.

“I almost threw the items to the ground and left the store without paying,” Ricardo remembers.

A family member who was a doctor told him it was most likely kidney stones.

“He prescribed a pain killer, a drug to prevent vomiting, and something else. Back then, we only had to go to the pharmacy downstairs and that was it.”

But the next day, Ricardo noticed blood in his urine.

“Like a good macho man, once I saw blood, I got scared,” he jokes.

An ultrasound scan followed – and the look on the face of the doctor who conducted it told Ricardo and his wife, Corina, that something was amiss. But the doctor couldn’t yet tell what. So Ricardo would have to undergo a series of tests – all of which were covered by his insurance at the time.

When the results were due, he went to see a friend who was an OB/GYN and had delivered the couple’s two daughters, 14-year-old Ana Karina and seven-year-old Camila.

“I was in the waiting room with a bunch of pregnant women. When I showed him the results, his faced changed,” Ricardo recalls.

His friend fast-tracked him, so that instead of waiting for a month, Ricardo saw a nephrologist, a kidney specialist, the next day.

Where Ricardo’s kidney should have been, there was in fact a huge foreign body.

The tumour was almost the size of a baby, Corina explains. He refers to it as el bicho (the thing). That bicho had been inside his body for four years and had become so well established it even had its own venous system.

If it hadn’t been for the fact that one of the veins had broken, causing the groin pain, Ricardo wouldn’t have known it was there.

The nephrologist explained that he’d previously had a patient with the same condition.

“Had?” Ricardo asked.

“Yeah, he’s now deceased,” the doctor answered.

The nephrologist said the best course of action would be to remove everything, as there was almost nothing left of one of his kidneys and the tumour had begun to invade the inferior vena cava, the vein that carries de-oxygenated blood from the lower body to the heart.

The procedure would be complicated. But Ricardo and Corina would have to overcome another major obstacle before they could even get to that point.

“My work insurance didn’t cover the costs,” Ricardo explains. “I had to get the money otherwise I could not have the surgery.”

“I wrote many letters explaining I was a parent of two children, and I needed the procedure in order to survive,” says Ricardo, in a tired, almost resigned tone.

They knocked on as many doors as they could: companies that provided money for health aid, public institutions, the state government.

“In Miraflores [the government palace] they told me to have surgery in a public hospital, which I refused,” Ricardo explains. “It’s not a matter of snobbery, or pretending I’m rich, but the type of surgery I needed required well-equipped facilities, such as a private clinic. Sadly, a public hospital can hardly provide basic medical equipment.”

Ricardo and Corina finally managed to get the money together, and he had his tumour removed. He has a 12 inch keloid scar across his stomach – and plenty of unpleasant memories – to show for it.

One of the first things he did after the surgery was get his own medical insurance.

Round two: The edema

Doctors claim the brain tumour was a reappearance of a previous tumour [Alejandro Cegarra] 
Doctors claim the brain tumour was a reappearance of a previous tumour [Alejandro Cegarra] 

A few months ago, Ricardo was taking a stroll with his youngest daughter, Camila. They both have a sweet tooth, and were looking for something to kill the craving. Ricardo had been suffering from severe headaches.

“I remember seeing the sidewalk, and calculating the distance from where I was standing to the ground,” he says.

Corina describes how he lost his balance and fell, taking Camila with him.

They went to a private clinic to see what was causing the headaches. That was when he was suddenly overcome by an even more extreme pain.

“It was so strong he almost fell to the ground. Then he went to the bathroom to gag,” explains Corina, standing beside her husband, just as she has for every medical test he has endured.

When the test results returned, it may have been different doctors to deliver the news, but their expressions were familiar.

He had an edema, a swelling, between both brain lobes, and would need surgery, again.

“Are you speaking properly? Are you feeling well?” the doctors kept asking him, their anxiousness written across their faces.

The procedure would cost 700,000 Bolivars (more than $111,000 at the 6.3 BsF. exchange rate used for medicines and food). But Ricardo’s insurance would only cover costs up to 150,000 Bolivars.

“I started to write letters again, just like I did five years ago,” he says.

But some of the institutions he appealed to in 2010 no longer exist and the country’s cash flow simply isn’t what it was then.

Then somebody at Ricardo’s place of work told him brain surgery would be considered extremely urgent and might, therefore, be covered in full by his insurance.

In a country where currency devalues at an unknown speed – no official figures have been published since June 2014 – cost estimates are usually valid for 15 calendar days, at most.

With the estimate for his surgery in hand, Ricardo had an anxious wait for his insurance companies to give the green light for it to go ahead.

“You try not to get worried, but it’s unavoidable. When one said ‘yes’, the other said ‘no’, and then you had to wait for the paperwork. Those were high-stress moments,” he reflects.

But before anything could get done, the doctors needed to fix the headaches and constant pain.

A doctor prescribed Dexamethasone, which had to be injected three times a day. Ricardo and Corina searched for it in different drugstores, without success.

Feeling desperate, Corina called her father’s doctor. “She told us that it had been a long time since any patients of hers could find such a basic medical supply. Therefore, she bought a whole lot of it overseas, and kept it for cases like ours,” Corina explains. “She gave it to us, and asked us to replenish it once we found it in a drugstore.”

With this donation, they were able to cover the first few doses. But Ricardo needed a month’s worth of the medication. So the couple called a cousin, who was a pharmaceutical sales representative and lived abroad, and asked her to see if anyone in her network could help them. They wrote letters to their extended families who lived in other parts of the country.

“Everyone helped. We cultivated a solidarity network, which has aided us in finding every medication, for support, for everything.” Corina’s eyes fill with tears as she speaks. She is usually so stoical; an emotional breakwater for her family with an ever-ready smile. But there are moments when she talks about what they have been through and the words form a knot in her throat.

Round three: Radiotherapy

Ricardo and Corina are cautious about not revealing too much to their daughters, Ana Karina and Camila, about Ricardo's battle with cancer [Alejandro Cegarra]
Ricardo and Corina are cautious about not revealing too much to their daughters, Ana Karina and Camila, about Ricardo’s battle with cancer [Alejandro Cegarra]

“People ask us whether the lump was benign or malignant. The last name did not matter. What mattered was that it was something inside his skull,” Corina explains.

In the same calm tone he seems to adopt regardless of the topic, Ricardo says that what frightens him is his daughters’ futures. “I’m worried that this will be my legacy to them.”

Ricardo and Corina do not want to deceive their daughters, but neither do they want to cause them unnecessary suffering. The word is forbidden in their home. They explain what they must – with no more or less detail than they feel is required.

If Ricardo is experiencing a migraine, he often conceals it or leaves the room so that his daughters don’t witness his pain. But Camila sometimes asks whether the scar on his head hurts him.

The couple remember how after the first surgery, Ana Karina asked whether she had caused his stomach to crack by sitting on it as they played together. “When she recalls those questions, she gets embarrassed and laughs. Poor thing, she’s been through a lot,” Corina adds.

But Ana Karina has matured since then. They remember the day she came home and asked her father: “Dad, have you had cancer?”

With the edema now out of his body, Ricardo goes to the hospital to see what the next stage in his treatment will be. He’s told that he will have to have 25 radiotherapy sessions in order to eliminate any trace of the tumour.

That is 25 days when he will have to run down all 16 floors of his building because the elevator is broken; when he will have to leave his home at 5am to avoid the traffic that would otherwise plague his 25 mile journey to the hospital in the car he has borrowed from his cousin because he does not have his own. But Corina will be beside him every step of the way.

She repeatedly expresses gratitude for the flexibility her workplace has permitted her during these hard times. But her greatest thanks is reserved for Divino Niño (the ‘Divine Child’ or Jesus Christ).

As Corina gives thanks for their blessings, Camila plays with dolls, dances and applies lipstick. She is playful and talkative. She wants to be a fashion designer when she grows up, but for now would be happy for her dad to play with her more.

Ana Karina is more serious. She is studious and neat, and loves photography. She barely speaks and doesn’t want to answer any questions. But she has told her father to tell her side of the story. “Tell them it hasn’t been easy for me,” she urged him.

Both children sit close to their dad, but never so close that they might hurt him.

Ricardo's wife, Corina, expresses her thanks to Divino Niño (the 'Divine Child' or Jesus Christ) [Alejandro Cegarra]
Ricardo’s wife, Corina, expresses her thanks to Divino Niño (the ‘Divine Child’ or Jesus Christ) [Alejandro Cegarra]

This article first appeared in the June 2015 issue of the Al Jazeera Magazine. Download it for iPads and iPhones here and for Android devices here.

Source: Al Jazeera