Having recently graduated from high school, she went for a summer to Minnesota to volunteer at a camp for children with development and mental disabilities. Today, she is a psychologist, graduated from Universidad Pontificia Javeriana in Bogotá, with a Master in Functional Analysis in Clinical and Health Contexts from the Universidad de Almería in Spain, seeking to help patients with hematology-oncology diseases.
Tell us a little about yourself.
I graduated high school from the Santa Francisca Romana School in Bogota, and that is very important for me to say because they always educated us with the purpose of serving. And that’s been a part of me ever since. It’s why I went for 8 weeks to camp: I’ve always enjoyed helping.
After graduating I studied psychology. The last two years were the ones I’d been looking forward to the most, because, back then, at the Javeriana we had internships for 2 years. And my internships were always clinical. One was in a school, another in a geriatric center and the last year at the Oncology Center in my university.
That was my first contact with cancer: the pediatrics board.
Must’ve been emotionally tough.
Yes, and no. There are people that can’t stand it. People who know the child is going to die and just can’t take it. I care about it, a lot, but I don’t crumble because of it and that’s part of the reason why I got accepted into the program.
How long did the internship last?
A year, so I got to see cases of people that had been there for a while and new ones whose case advanced quite fast. Among those, I met children that died or I knew were going to die.
Was there any patient that really got to you?
(She smiles) He was such an amazing kid! He had a tumor that was affecting his eye, deforming his face a little. He had had many surgeries and treatments but was not responding well.
But he was such a strong kid! He would walk down the pediatric board hall and go, “RAAAWWWWRRR!! I’m a monster!!” He called himself a monster! How many times must another kid have asked him: “What’s happened to your face?” And everytime he would just say, “Well, I’m a monster!! RAAAWWWRR!!” and he'd walk away to keep on playing. He knew he was scary to people and he thought it was great. Nothing hurt that boy; he had an incredible personality and a great attitude.
Another one was this girl with osteosarcoma (bone cancer), who’d had her arm removed due to it, but they still couldn’t control the disease. I think in this case it was the doctor who impressed me, because, I’d never heard a doctor say: “What do you want?” And I heard her say it.
The girl, a teenager, was starting to get really strong pains. The mother was extremely stressed and wanted her to get more treatments, so the doctor asked the girl to enter the consulting room alone and asked: “Do you know what’s happening to you?” When she said she did, the doctor asked her what she wanted to be done and the girl replied: “I want it not to hurt.” So the doctor said: “Perfect. That, I can do.”
"I think in this case it was the doctor who impressed me, because,
If under those circumstances someone said, ‘You know what, I can’t take it anymore. I don’t want to live like this.’ Do they have a right to euthanasia?
It is known here as “assisted death” and the person opting for it has to be in their right mind to reasonably say “I want an assisted death.” The law here says that you have the right to such a death and that the doctor can’t be penalized for aiding it, but since there isn’t a specific protocol for it, no doctor ever dares.
However, there was some news recently regarding the regulations for euthanasia cases in Colombia. It started because there was a woman with a terminal cancer that was causing her excruciating pain and she asked for an assisted death but the doctors denied it. So she sued them.
She died before the court ruling, but it basically stated that a protocol for euthanasia in Colombia had to be made and they gave them two years to make it.
What’s your opinion about euthanasia?
Oh, wow. Well, if I ever had to be in such a situation, I would opt for it.
It’s hard to live in constant pain. It’s hard to live with a disability stemming from pain. Maybe even trapped in your own body like we saw in ‘The Diving Bell and the Butterfly,’ incapable of saying: “I don’t want this anymore”. That, for me, is probably the worst part of it.
Besides, one becomes a burden for the people caring for you. For your mother looking after you, or your brothers taking care of you, or your friends… What if you have no one? In the health center where you are, I know for certain they’ll care for you with a lot of appreciation, even affection, but it’s still an exhausting thing to do. It'd be interrupting the life of others.
In my opinion, if there’s no quality of life, there should at least be quality of death.
So, you finished your internship and graduated from University. What happened next?
After that, I went to Spain to get a master degree. Being there I had the opportunity to work in a project with women who had fibromyalgia. This is extremely painful and it tends to be progressive and thus affects their lifestyle enormously.
That was when I first encountered chronic pain and various approaches to the treatment. Ways of treating it even beyond the pain, because in fibromyalgia it’s something that will never really go away. It was then that I learned that increasing life quality is very important and that it can just be done through prevention. Prevention is the best cure for anything.
When it comes to pain, prevention is crucial. It may avoid the person reaching the point where morphine isn’t good enough anymore. It’s more like, "What can we do to delay that pain level by handling it better now?" It’s what we call Palliative Care, which is often confused as something to do only when the person is about to die. But that’s wrong. Palliative Care needs to be done from the beginning.
What did you do once you returned to Colombia?
The first job I got here was at the Clínica La Inmaculada, where I still do personal consultations. So, the patient comes, tells me their problem and we begin a process to help the patient achieve what they're seeking, whether it is to restructure their life, to get rid of a fear, to be less sad, to control an anxiety, to get over a trauma or something else entirely. Since it is a psychiatric clinic, we receive any patient sent by the EPS [Colombian health care system].
I don’t like that they have problems per se, but I do love being a part of the solution; being able to guide them through the process of getting better.
Of course, makes what you do meaningful.
Totally. I can’t see myself working at an office in HR receiving new employees or working to help a company become richer.
Goes with what we were talking about helping and being of service to people.
Exactly. And the help we provide is individuaized case by case for each person. So I started getting interested in seeking other ways in which I could be able to help more than a single person at a time.
It was then that, having been a year at the clinic, I got this opportunity at the Foundation. Just having the interview was a tough decision, because I’d have to cancel my clinical appointments to be able to go. Doing that tears me apart because they’re so hard for them to get. Sometimes it can be months before they get assigned a date, there are just so many people. But I did go.
By the third interview I told the director 'I feel like this job was designed for me'.
What are you working on at the foundation?
Well, they have three programs. The first one helps the parents of children with any kind of cancer. The second aids adult patients with lymphoma. The third program, is the one I'm involved in, and works with patients with hematology-oncology diseases.
In my program we focus on adult patients with leukemia, myeloma, myelodysplastic syndrome and myelofibrosis. That’s our specialty and what the foundation itself is an expert at: blood cancer.
How did you have to prepare for the job?
First, we all have to know about the diseases we work with. So I’ve had to learn about chronic myeloid, acute leukemias and all those other hematogy-oncology diseases I mentioned before.
Second, we have to be informed about health regulations in the country. What laws have been approved, what the patients’ rights are and all those legal health topics. We have to keep our knowledge about it up to date to be able to help the patients.
How do the patients reach the foundation?
Word of mouth is the best and most common way. Every single patient, based on their experience, always motivates those who need it, to visit us. There’s also Facebook, Google+, Twitter and our website which is being updated at the moment.
We’re also a part of Alianza Latina and if you google chronic myeloid leukemia, you will most likely get a link to CML Advocates Network and that will lead you to foundations all over the world, that are connected, and we're among them ourselves.
When you say ‘connected’ you mean an international support network between the foundations?
Yes. On their site they have information you can download and share with the patients. The idea is to stay connected with other foundations, in order to exchange information, strengthen networks and help each other educate patients in everything that concerns their disease, its treatment and the healthcare system. Which is why they also organize congresses in order to share and exchange all this information, develop better strategies together and take this to each of our countries to be implemented.
Along the year, several talks are organized as well. Patients are invited these ones, to keep them informed about it all. Keeping our patients educated is the most important job at the foundation.
In the leukemia program we even travel to other cities. Last year I went to Barranquilla, Medellin and Cali helping out with the meetings and finding the professionals that will be participating. It is always best to let the experts do the talking, so I have to find hematologists, nurses, oncologists and activists to give the talks.
In what other ways have you participated?
Since the foundation has become well-known, we’ve been invited to several meetings and advisory boards to help evaluate new technology and medicine developments. Last year I participated in two.
The first one was the IETS (Institute for the Evaluation of Health Technologies). They evaluate technologies, procedures, medicines and so on. That year they were examining new myeloma medications to be included in the POS.
The second one was the best, because it was with a pharmaceutical that contacted 9 people in the whole world to sit with them and share their opinion as experts, to better understand the needs of myeloma patients. I was there as an expert, but more than anything I just felt I was learning so much! I just thought to myself: wow, this is amazing! Besides, it was really motivational to be the voice of my patients there. It became less of an individual effort and more of a “helping everyone” sort of thing, and I love that.
You mentioned an investigation before, how is that going?
The investigation is a bit more of a personal interest I have regarding the modulation of chronic pain. It’s something I have wanted to increase my participation in for a long time.
What do you seek with it? To work chronic pain psychologically?
Yes. Chronic pain is definitely what you would call ‘co-morbid’ with mental disorders, especially with adjustment disorders, depression and anxiety. And it makes sense! It’s a pain so strong it interrupts your life. It’s not rare that you would have a hard time coping when you can’t do certain movements anymore, you have to change certain habits… it’s complicated.
What interests me the most is learning to help them block the pain, so I will have to learn a lot about neuropathic pain.
"I started studying Colombian sign language and it’s something I
To block it with mental techniques?
Yeah. Have you seen those people at the circus that lay down on a spiked bed or that have bricks be broken on their belly and they’re all “aarggg I feel nothing”? It’s the same. They block the pain. Now, fibromyalgia’s pain and in general neuropathic pains are really hard to understand and I don’t know the science behind being able to block it, but someone has to know. I really think it’d be amazing to learn how to train people with these diseases to block that pain.
Have you sought support within any organization?
Yeah, I talked about it to the clinic and since they want to do research we’re starting to work on it.
In the future, how do you see yourself?
I see myself learning more about patient rights and all the laws in our healthcare system in order to keep the labor the foundation does to help patients. I really liked that part of the work, so I’d keep it and on the side I would have my consult room for private consults where I can keep helping people in a more personal way.
Some time ago I started studying Colombian sign language and it’s something I want to keep doing. They’re a minority and have less chances of meeting a psychiatrist, so it’s something I want to keep working on, but this time to meet their needs as a psychology therapist.
Last but not least: Is there someone, in your field of work, that’s really motivated you?
The foundation’s director, Yolima.
I think her grandmother had chronic myeloid leukemia and that experience made her understand the needs of the patients, and thus felt motivated to start the foundation herself. She is a very strong woman and has been able to make the organization get to where it is now. We’re not many, but they know who we are.