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Julia Ojeda (Acute Myeloid Leukemia Survivor)

Julia Ojeda (Acute Myeloid Leukemia Survivor)

First experience

When I first got leukemia, I remember being in school. The illness was pretty quick. I remember feeling very weak and dizzy. I often remember feeling dizzy and fainting when we went to mass. The teachers would call my mom to pick me up. Whenever they checked my temperature, it would be very high. 

My experiences before symptoms

Before the symptoms started, I used to tell my mom that I was feeling weak. My mom was quick to catch on, and before taking me to a paediatrician, she took me for a blood test so that the paediatrician could have a clear idea. When they got the results, they suggested that she redo the test because they had found something strange. 

I remember being very sick on the day the second results were due. The results came, and the doctors suggested we see a specialist. All these memories are a blur, but I remember that the second test was taken in the morning, and by the afternoon, I was in another hospital with a new doctor. At that age, it was difficult for me to even read and pronounce Haematologist Oncologist.

Encountering cancer for the first time

I had to stay in the hospital after being diagnosed, and the treatment started. I have come to understand that the type I had grows and acts fast and also learnt that leukaemia is the most common type of cancer. But all the valuable information that I have discovered till now has been years after my treatment started, and back then, it was difficult for me as I had to stay at the hospital for a month for the treatment. I was constantly injected and treated with medicines. 

Soon they decided to put a catheter in me so I would not be repeatedly pricked for medicines. My hair started falling, and they cut it short. It is hard for me to talk about even today, and thinking about it makes me emotional. The first time I saw myself with short hair wasnt easy. 

As a child, processing the events was even more challenging. Now I have had the time and space to think about it, and I like to always talk about this now since I am a wellness coach and I get to support people who have gone through similar experiences. Talking helped me understand what I went through. Five doctors would visit me every day to check how I was doing, and as a little child, it was complicated and confusing.

Positivity during difficult times

A person had come to perform a healing meditation to support my bodys energy. The first question he asked me was, Do you know what cancer is? I told him I had no clue. He told me to imagine my body being filled with tiny colourful balloons that danced to one consistent rhythm. When a few balloons do not dance to the same rhythm and start to dance to a different tune, then those balloons are called cancer. He told me that the cancer cells were still my balloons, and I could ask them to dance to the same tune and that they would listen.

After this incident, I started to send positive messages to my body, and my mother also promoted these thoughts in me. My family has always been optimistic about everything that happens in life, and as I grew and supported people through their journeys, I have learned to surpass the difficult emotions.

After getting better, I was allowed to leave the hospital, but the treatment continued for a year. I still had the catheter through which they gave me my medicines. I improved after a year and a half, and I remember my ninth birthday when I was still undergoing treatment. I continued my schooling because I have always wanted to study, but I was homeschooled because of my condition. When I reached high school, it was vital for me to continue with my friends, so I joined a school where my parents explained my situation to the teachers about my case beforehand so that they dont ask any uncomfortable questions. But I remember that the girls at the school were mean. I remember them saying, We need to run away from Julia cause she is a monster! and those words hurt me. And because of incidents like these, I was never comfortable talking about my cancer. As a kid, I was ashamed to talk about any of it. 

Why me?

As a young kid, the question of why me was always there, and now that I follow so many people through their healing journeys, I have come to understand that this question is very common. This question bothered me when I got diagnosed with cancer for the second time. I was 14 years old then, and until then, I did not know that cancer had a remission period of five years. The doctors were always closely following up with cancer tests, and I didnt realise that I had to be cancer-free for five years before doctors could say I was healed.

Encountering cancer for the second time

When I got diagnosed the second time, I was older, and I was utterly broken this time. I am originally from Venezuela, and the doctors said I needed a bone marrow transplant, which was impossible there. Through insurance that my mom got from her work, they transferred me to a clinic in Houston, Texas, where I was treated for the second time in the Texas Childrens Hospital. 

The one difference I noticed between my treatment in Venezuela and my treatment in Texas was that the doctors in Venezuela suggested that I have a psychologist during and after my treatment. In contrast, the group of doctors in Texas didnt put me in the hands of someone who could support me regarding my mental health. The lack of that mental and emotional support might be why I fell hard into depression the second time I got leukaemia. 

In the US, for treatment

I was in the US for around a year and turned 15 when I underwent the treatment. The doctors initially told us that the treatment would last for three months, but we ended up staying there for way longer. With time I was growing desperate because I was away from my family, and it was just my mom and me. It was beginning to get very lonely for me, and now that I know the grieving process, I realise that we lost a lot of things during that time. I lost my sense of being, my will to live and the importance of being healthy and fit. I had always been optimistic, but I was so alone and sad that I even wanted to die during that time. 

My pillars of support

The hospital connected me with a psychologist as the treatment went on. But she was not the right fit for me, so I did not go through with her. I was in theUS when the internet was slowly becoming a thing, and I gradually got in touch with my friends back home. Another thing I realised was that not all people would walk this journey with you, and there is a kind of barrier for people to be there since a lot of them dont know how to be there. 

And through my journey, they were my pillars of support because with cancer, you are also prone to secondary illnesses and because I had to go through full-body radiation when I got cancer the second time, one of the side effects was Premature Ovarian Failure, where I got menopause early. Another illness I had was cataracts caused by the bone marrow transplant I got from an unrelated donor. Later, after the treatment, I got another secondary illness: Osteoarthritis.

Secondary illnesses

With Osteoarthritis, I was in denial about the illness for a while. I loved my job and didnt want anything to come in the way. Only after the pain in my shoulder got unbearable did I go to check with the doctors, who said that I would soon need shoulder replacement surgery, which again took me down the spiral of depression before finding a way out.

Apart from these illnesses, Ive been doing pretty well. I feel healthy, I am helping other people going through the same journey, and I have learnt a lot about coping with the treatment and managing the secondary illnesses. I have come to understand that the perspective you have from life will determine how you live. 

Surviving Leukemia

When cancer came into my life for the second time, all the memories and experiences that I thought were in the past came resurfacing, and it made me realise that the incidents were traumas that I had not processed. I realised that I had to change my lifestyle to accommodate the illnesses that came with cancer, and I did so accordingly. The General Physician that I was consulting in Holland referred me to a psychologist that, to be honest, saved me. I had initially been given medicines to deal with the depression while undergoing cancer treatment. Still, now, the doctor reduced the medication and helped me deal with the emotions I was feeling.  I also started seeing a wellness coach who helped me heal my body and bring it back to health. Cancer has been a huge part of my life, and learning to grow with it has helped me understand who I am. 

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