When a family member develops cancer, it affects the group as a whole: the trauma can either isolate individuals, who are dealing with their pain and anger in their own unique ways, or it can bring them together and make them an even stronger team, each serving as a rock for the other in their struggle as patients or caregivers.
Now, imagine that happening twice to a family nucleus of three in the span of four years and in one of the most challenging social, political, and economic contexts of Latin America.
In San Diego, a 112,000 habitants town in the Caribbean country Venezuela, Bárbara (28) and her mother Gabriela (54) both endured and overcame different types of cancer from 2014 to 2019.
Contrary to what is expected, they are actually thankful that they went through that experience and cherish the lessons that now allow them to spread knowledge (or wisdom) to help others.
The following text, hopefully, makes justice to the very rich insights these kind women shared with us and want to pass on to other cancer patients, survivors and caregivers.
- 1 It all started with a sprained ankle…
- 2 The inevitable whiplash of a deficient health infrastructure
- 3 Words have power: Barbara’s blessing and Gabriela’s curse
- 4 Getting checked regularly: the easiest way to prevent breast cancer
- 5 First patient, then caregiver
- 6 The layers of challenges often unseen: how cancer looks in countries in development
- 7 Cancer repels, but also attracts
- 8 Naming your cancer: a game-changer in perspective
- 9 The beauty of offline communities
- 10 Final thoughts
It all started with a sprained ankle…
In 2012, Bárbara Pereira (17) was in Caracas, Venezuela’s capital city, competing in a modeling contest to be the presenter of a well-known regional music channel. In one of the runway tryouts, her ankle gave out and she fell, getting disqualified.
Disappointed and sad, she had to pack her stuff and go home.
Due to the ankle sprain, she went to see an orthopedist, who did a full inspection of her body. He found a lump in her right inner thigh and advised her to get it checked furtherly. However, she moved on with her life downplaying what said lump could turn into later.
What started as an isolated event that got her out of her competition evolved into a series of symptoms that grew harder to ignore in her everyday life: weakness in her muscles, low tension, irregular menstruation, dizziness, and a ball-shaped mass that, slowly but surely, took over her thigh.
She didn’t actually worry until, two years later, the mass was painfully pounding in her leg. Concerned, her mother, Gabriela, decidedly demanded Barbara go to the doctor.
And so Barbara did. After carrying out exams, sonograms, and resonances that came out unfruitful, her GP, Giovanni Mogollon, ordered her immediate surgery.
Not a full week later, during surgery, the doctors found it: Barbara’s tumor.
Fortunately, Doctor Mogollon did a great digging job and removed it completely. Her mother, who saw the tumor after surgery, describes it somewhat horrifyingly:
Barbara went back to university after a few days of leave. Around two weeks later, on the day of an important test, she received a call that made her abruptly abandon the classroom:
Indeed, the results of the biopsy were ready: she had a soft tissue sarcoma stage 0.
According to a peer-reviewed study in the National Library of Medicine of the US1, soft-tissue sarcoma is a rare cancer that accounts for approximately 1% of all malignant tumors. Although they occur in various age groups, soft-tissue sarcomas account for 8% of all malignant tumors developing in adolescents and young adults, suggesting that they are not rare in this age group.
Her diagnosis coincided with a major oncology conference in Caracas, and most doctors had left town. With no time to waste, Barbara booked a rush medical appointment with one of the few available oncologists in San Diego.
The prognosis was ruthless. Within minutes in her office, the doctor told Barbara that she would need 71 rounds of chemotherapy and that her chances of survival were slim.
“Start cutting that long hair of yours, because it’s going to fall out anyway. And forget about having kids, because you won’t be able to”, she bluntly dropped.
Knowing it’s recommended to have more than one medical opinion in such delicate situations, Barbara and her family didn’t settle.
Luckily for their family, she had a physiotherapist cousin who connected her with who, to this date, are her and her mother’s oncologists: brothers Wilmer Ramos Zerpa and John Ramos Zerpa.
They reassured her after such a difficult initial prognosis and cheered her up since the moment they met. Making a good match with the doctor who will take care of you while going through a disease like cancer is critical for optimal progress as a patient.
In fact, instead of 71 sessions, she only needed 6 because of how well she responded to the treatment.
It was an overwhelming journey, but eventually, Barbara faced her fears, went back to college and completed her major in Journalism.
However, being a different person than before cancer, she discovered journalism wasn’t her true passion. With the professional help of her psychologist, she explored new interests and found fulfillment in cosmiatry, and specialized on making oncologic patients feel and look as beautiful as they are.
Although she still suffers from side effects such as occasional stomachaches or nausea, Barbara considers herself “lucky” to have had access to medications to reduce side effects while she was undergoing chemotherapy, which cannot be said for her mother (and many other Venezuelans).
The inevitable whiplash of a deficient health infrastructure
2014 was one of the toughest years in Venezuela’s recent political history:
That year, a series of protests and political demonstrations broke out due to the country’s high levels of urban violence, inflation, and chronic shortages of basic goods attributed to economic policies such as strict price controls.
The economic crisis broke Venezuela’s already depleted healthcare system. Hospitals had no supplies, machinery was defecting because there was no money to repair them or buy spare parts, and too often, there just wasn’t enough room for patients in public facilities.
Which is why, when Bárbara was receiving her radiotherapy, her medical team was forced to make an impromptu decision that would cost her a lot: with thermoplastic masks nowhere to be found in the country, they opted to “protect” her leg by covering it with regular tape.
Under normal conditions, dermatitis and mild burns are a common side effect of radiation, but given the precarious conditions in which she was treated, Barbara developed a third-degree burn that worsened over days and left her bedridden.
Her skin wasn’t regenerating properly because of the effects of the chemo, and her 106° F (41° C) fever didn’t stop.
She was in such critical condition that she even recalls seeing a bright light in her sleep and a man telling her to not walk there. Whether it was a fever hallucination or religious experience, it gave her the resilience to keep fighting:
Gabriela, clouded by 2 weeks of sleep deprivation and heartbroken to see her daughter like that, made a decision.
Words have power: Barbara’s blessing and Gabriela’s curse
Nurys Gabriela Flores (54), who actually prefers to go by Gabriela, is a woman dedicated to service. For 25 years, she was a teacher for kids with down syndrome and other special conditions.
She’d had difficulties to conceive and, supported by her husband Juan, tried several fertility treatments until she finally was conceded her family’s brightest miracle: Bárbara.
Seeing her only child in so much pain, Gabriela kneeled down in her bedroom and prayed:
Whether by chance or thanks to the prayers, soon after, Barbara recovered. Her head oncologist provided her with in-home nursing care and she managed to get out of the dark hole she appeared to be sinking in. And the Pereira family finally closed the chapter.
However, it was Gabriela who, a couple of years later, found herself with a tense medical situation on her hands.
Since December 2018, she’d been feeling tired and restless, with persistent pain in her right arm and back.
In early January next year, while trying to close a stuck window with both hands, her pain went off excruciatingly:
At her right breast, she felt a rock-solid, ball-shaped mass.
It was the beginning of her very own cancer journey.
Getting checked regularly: the easiest way to prevent breast cancer
Gabriela describes herself as a disciplined woman when it comes to annual medical check-ups.
However, precisely in 2018, she missed her appointments for the first time ever. Just that one time was enough for the disease to creep in.
During October, World Breast Cancer Month, we want to emphasize how important it is to get screened every year, by all means.
In the US, the overall death rate from breast cancer decreased by 1% per year from 2013 to 2018. These decreases are thought to be the result of treatment advances and earlier detection through screening2.
Gabriela’s diagnosis was ductal carcinoma in situ (DCIS), a non-invasive or pre-invasive breast cancer. This means the cells that line the ducts have changed to cancer cells but they have not spread through the walls of the ducts into the nearby breast tissue.
Doctors told her it could’ve been caused due to the heavy use of hormones to manage to get pregnant. The source it’s impossible to detect, but one constant remains the same for all possible scenarios: regular screening and self-examinations should always be a must for women of all ages.
First patient, then caregiver
Barbara, who had by then experience as a patient, played a role along with her father as a great caregiver for her mother.
Barbara warned her of the side effects of medications, sensations that came along with the treatments, and tricks to avoid some of the consequences of chemo and radiotherapies.
For Gabriela, knowing beforehand that what she was going through was expected served as a great comfort and relief.
By March 18, 2018, Gabriela had surgery to remove her tumor.
Due to the deteriorating situation in Venezuela, getting two procedures (if necessary) was off the table: the biopsy of the tumor had to be on the same day of its extraction to know if surgeons also had to remove the ganglia or not.
It happened accordingly: the doctors extracted the tumor, gave it to Barbara and her father, they went to a laboratory to have it analyzed, and returned to the hospital where they later received the call and were told the tumor was malign —all of it, remember, while Gabriela was still in anesthesia.
It was a long day, for sure, but the efforts were worth it: Gabriela, after treatments, is now cancer-free, just like her daughter.
The layers of challenges often unseen: how cancer looks in countries in development
By 2019, Venezuela was going through a leadership crisis that awoke protests again, and a hyperinflation process that some studies estimate reached 10 million percent3 that year alone.
Although Gabriela didn’t get burned with tape as it happened to her daughter, her radiotherapy sessions were still hasty.
Not only did she have to travel two hours by road, on public transport, to get them done, but she also had to deal with chaotic situations such as the risk of being caught in crossfire as clashes between guards and demonstrators took place.
To the civil unrest add an ongoing energy crisis, with nationwide blackouts going on for days, and you have a perfect storm for someone undergoing cancer treatment. The frequent power outages damaged the radiation equipment, preventing Gabriela from duly completing her cycles. She had to receive 45 therapy rounds instead of the originally prescribed 25.
And she wasn’t the only one affected: according to a study conducted by Venezuela’s National Hospitals Survey, at least 233 people died between 2019 and 2021 in the nation’s hospitals due to electricity failures4.
Gabriela’s chemotherapies were also eventful as she had to find a way to bring the medicines from Colombia, since most essential ones had mostly disappeared from Venezuelan pharmacy shelves. In the oil-rich country, the shortage of cancer drugs reached 95% percent in 2018 according to Venezuelan Pharmaceutical Federation5.
Read more on the state of cancer care in Venezuela in this study.
Other episodes include Gabriela and her family closing all the windows in the house and covering themselves with blankets seeking protection from the tear gas the police used to break up protests nearby. Or how Gabriela could not mitigate the gastric side effects of the chemo because there were no longer reflux medicine in drugstores.
After her treatment finished, Gabriela was prescribed for 7 years of tamoxifen. The inconsistent supply of the product makes her buy from different laboratories and countries, and each time she switches manufacturers new side effects arise.
Cancer repels, but also attracts
When asking Gabriela and Barbara how cancer affected their family, it goes both ways around:
Although it distanced them from certain relatives who didn’t fully understand their process, it also deeply tightened their family bond.
Besides, their journey also gave them the opportunity to create new friendships: being such recurring visitors to the hospital, they got to know nurses, doctors and other patients, who now became the closest people in their circle.
Mental health: the professional help patients shouldn’t overlook
Throughout the whole conversation, the mother and daughter had one constant topic coming in and out of the chat: mental health.
They acknowledged how meaningful it was to have professional counseling during their journey and assured that every cancer patient should also consider the same.
Gabriela, who still attends her therapy sessions, even recurred to a psychiastrist once: anxiety episodes were so frequent and difficult to bare she took proper medication during a month to successfully overcome the crisis.
As for the family group, the disease made them grow so tightly together that their psychologist didn’t only help them with anxiety or vocational matters: he also guided them to regain their independence and personal space back.
Naming your cancer: a game-changer in perspective
It’s easy to villainize cancer. After all, it’s a dark mass made of “evil” cells that end with human antibodies and make our organs slowly stop functioning correctly.
However, one of our greatest takeaways after talking with these two brave, insightful women is how empowering it can be to see cancer not only as an equal, but as a friend.
In their case, they named their cancer based on the learnings and positive feelings it left them with:
- Relief in the Soul (Alivio en el Alma) — Barbara
- With Overwhelming Strength (Con Fuerza Avasallante) — Gabriela.
To date, Barbara and Gabriela don’t even like to say that they “beat” cancer because of the negative connotation it gives it.
The beauty of offline communities
Thanks to their inspiring story, Gabriela and Barbara have organically emerged as leaders in their community. In San Diego, these survivors are known for providing guidance without asking for anything in return.
Even local oncologists refer patients to them for coaching on how to deal with the disease’s mental impact.
Although they haven’t formally been part of a support group or an online community, they always highlight the importance of connecting with people who truly get what you are going through and emphasize how much lighter their journeys have been thanks to it.
Cancer gives you perspective
Cancer pulled Gabriela and Barbara away from many people especially because they no longer saw life the same way.
Moaning about small or uncontrollable things, for example, is one of the attitudes they no longer put up with.
After cancer, even the coronavirus lockdown seemed like something manageable.
“To be honest, we even made a little fun out of our relatives that were freaking out during quarantine,” said Barbara. “We were like ‘Oh, see how it’s like?’” Gabriela added playfully.
One day at the time
Appreciating little things, practicing patience, and being mindful of the present is one thing most cancer patients learn “the hard way”.
According to Barbara and Gabriela, living in a constant rush is the doom of our current society.
It’s never too bad
Instead of “it could always be worse”, which is a pessimistic lens to see life through, they adopted the optimistic “it’s never too bad” approach:
No matter what it’s going on around them, they know it’s wise to keep their minds open and ready for whatever challenge life throws at them. After all, it’s never too bad!
- Kunisada, T., Nakata, E., Fujiwara, T., Hosono, A., Takihira, S., Kondo, H., & Ozaki, T. (2022). International journal of clinical oncology. Soft-tissue sarcoma in adolescents and young adults. [Online]. Available at: https://doi.org/10.1007/s10147-022-02119-7
- Breast Cancer Org. (2022). Breast Cancer Facts and Statistics. [October 24]. [Online]. Available at: https://www.breastcancer.org/facts-statistics.
- Council on Foreign Relations. (2022). Instability in Venezuela. [May 12]. [Online]. Available at: https://www.cfr.org/global-conflict-tracker/conflict/instability-venezuela.
- France 24. (2022). Venezuela report details 233 deaths due to hospital power cuts. [March 30]. [Online]. Available at: https://www.france24.com/en/live-news/20220330-venezuela-report-details-233-deaths-due-to-hospital-power-cuts.
- TRT World. (2018). Venezuela’s medicine shortage sends cancer mortality rates soaring. [February 15]. [Online]. Available at: https://www.trtworld.com/americas/venezuela-s-medicine-shortage-sends-cancer-mortality-rates-soaring-15199.