What it means to have chronic myeloid leukemia at 25 years old. Stefania’s story

What it means to have chronic myeloid leukemia at 25 years old.  Stefania’s story

2023-08-23 14:09:06

“No hero, no warrior. Just a person who tries to live as best as possible with a chronic oncological disease, which generally strikes at 50-60 years of age, but which in my case appeared in 2003, when I was 25 years old.” The 25 year old in question is called Stefania. Today she is 45 years old, she is Roman, she is employed in a large electricity company, she has a 12 year old daughter. And the oncological disease he is talking about is chronic myeloid leukemia, a rather rare tumor, which in Italy affects around 2 people per 100 thousand, more men than women, and generally over 60: less than 30% of diagnoses concern people with less than 60 years.

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The discovery of the disease

“At the time I was attending university and physically I was more than fit – Stefania continues to say – I played volleyball at a competitive level and trained every day. I had no symptoms and 9 months earlier I had done routine blood tests, which came back perfect.” But one night, Stefania wakes up with strong abdominal spasms. And she would have ended up there, with an otherwise effective painkiller, if it hadn’t been for her sister, who told her to go to the doctor anyway: “Suppose you have appendicitis? she-she remembers-And so she convinced me, I went to the general practitioner, who without examining me immediately made me a request for hospitalization. My doctor saved my life without even touching me.” Once in the hospital, the doctors only needed a blood count to suggest the diagnosis, which was confirmed after a few days and some other tests: it was chronic myeloid leukemia.

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The doctor who told her she would be fine

Among the few memories of those first moments are the words that a doctor said to her shortly before they explained to her what she had and what her illness would entail: now they will tell her what is happening to her, but she must remember that she was lucky because I Many drugs have been discovered for cases like yours. You will see that your path will be a winning one. “I remember that doctor very fondly,” she says.

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Invisible diseases

Among those who accompanied her that day, there was someone who felt sick at the word ‘leukemia’, adds Stefania. She, however, remained stunned but calm, impassive. “I reflected on the reasons for that calm, and I understood that it was due to the invisibility typical of blood tumors”. Liquid tumors cannot be seen, there are no foreign masses inside the organs, they cannot be operated on, they cannot be removed. Stefania’s tumor could not be seen and showed no signs of itself. But she would have to live with it for a long time.

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Chronicity and the remodulation of projects

But what does it mean at the age of 25 to have a chronic illness, or rather a chronic tumor? “It means remodeling everything you had imagined, everything you had planned, because everything must be adapted to the rhythms that the disease imposes”. In Stefania’s case, adapting meant stopping playing volleyball for a while. Then, seeing that the treatments were working well, she imposed herself. “I said: either you let me play or I don’t care, and I returned to the field earlier than expected”. However, it also means becoming aware that you are a ‘long-term’ patient. “For doctors, being long-lasting is something positive. And it certainly is – Stefania reflects – But being long-lasting means different things depending on the phase of life in which the disease occurs. If chronic leukemia strikes at the age of 70, long duration can mean reaching 90 years or more: not bad and also a 70 year old has already made many free decisions in life, when healthy. Receiving a diagnosis of chronic cancer at 25 means changing choices and changing priorities. You start to fear that you won’t be able to have children, you wonder if it’s worth getting married and trying to start a family, if it makes sense to finish university or if it wouldn’t be better to do something completely different instead.”

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She changed her priorities. She says she traveled and toured the world for a year. She said she spent a month in India. She for having done what she feared she couldn’t do, for having lived “in a break from everyday life”. Then, as things went well, as the treatments worked, she went from the desire for survival to that of a good quality of life. “At a certain point you stop just wanting to survive, and you start wanting to survive like everyone else. In short, as time went by I thought: since the treatments work, why shouldn’t I resume my projects? And so I graduated in administrative sciences and got married. And I had Rachele, my daughter.”

Pregnancy “immediately”

To have her daughter she had to stop treatment and hope to get pregnant as soon as possible, that is, before the disease returned. And that’s exactly what happened to her. “I got pregnant very early. My daughter was delivered a little early because the disease level was rising. She went well, but I didn’t feel like risking a second pregnancy – Stefania confesses – which is why Rachele is an only child, a condition that she still doesn’t like very much today. So of course, the disease influences and has influenced my life and my choices. But it also allowed me to achieve a lot and have a lot of satisfaction.”

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The relationship with others

Many say that cancer changes relationships with others, with family, colleagues, friends. Stefania is chronically ill, and chronicity by definition changes this relationship forever. Is that so? “It’s exactly like this – she confirms – Every now and then you hear that you are a warrior, a hero, a survivor or even that you are an inspiration… But cancer does not have the same meaning for everyone. Oncological disease projects you into a different dimension, this is true. But it doesn’t make you a superhero. I know well that there are those who write books, those who make documentaries… But there can also be tranquility simply in the lives of patients. I, for example, don’t feel described by a strong story, my experience with leukemia is internal, I compare myself with myself, with my fears and my goals. I don’t feel like a heroine, but a person who has lived and faced a difficult situation that happened to her, like many other people face. And that she tries to get the best out of this experience, enjoying what comes every day. I take a drug that is working, yes there are side effects, but they don’t stop me from leading a normal life. I live them for what they are: my treatment path.”

The white heron and the lifelines

In 2004, Stefania founded a Bianco Airone patients’ association with the initial aim, she says, of making treatments that were new at the time available to everyone. “As time went by we understood that the association can do more than this. That patients bring unique experiences, stories that need to be heard. Listening to patients improves assistance, treatments, provides doctors and research with important indications. The words of patients are lifelines for other patients, their experiences make you understand that it is up to you: you can decide whether to remain hostage to this thing that happened to you and let it influence you all the years you have left, or whether, together to others, you can find a way to move forward. And this – concludes Stefania – is what happens to us thanks to the association: all together we find the strength and the way to tell our story, experiment and move forward”.

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