"Hello everyone, I am Juan Diego, and I want to tell everyone who is interested about my story:
Juan Diego, antes del diagnóstico.
On the 11th March 2011, my GP called me on my mobile to inform me that the results of the blood tests I had recently undergone showed that I had leukaemia and that I should go immediately to the La Paz Hospital in Madrid to confirm the diagnosis and begin treatment. I should mention that I "got lucky" because I only went for that analysis because my sister had immunoglobulin A deficiency. The doctor had invited my parents and me to carry out the analysis to determine whether my sister's disorder affected only her or whether other members of the family could have the same problem. In a twist of fate, there was a further surprise.
I am a technical engineer and when the doctor called me I was organizing the electrical ventilation system at three car parks in Madrid that were due to open that day. Later the very same day I was in the La Paz Hospital. The told me that that weekend I should have stayed at home and I probably shouldn't have got out of bed because my platelet and blood levels were so low.
After a spinal tap, the type of leukaemia was confirmed as acute promyelocytic type M3. Treatment was started instantly, due to the risks in the first 72 hour, and it was very strong. The treatment consisted of an induction and 3 cycles of consolidation chemo accompanied by Vesanoid/ATRA, which was a revolutionary new drug used exclusively for this subtype of leukaemia. I still remember how I suffered from a whole range of side effects from the pills, but up to now it has been worth it. I have suffered from headaches, pain in my bones, pericarditis, swelling of the pleura, dryness of the skin, etc. Chemotherapy didn't take my hunger or cause me to vomit, despite the toxicity; the effects depend on each person.
During the first days of the chemotherapy, my character was strong, despite not knowing how my body was responding. I spent the days closing the deals and bills of the work I had done. This helped me not to think too much about what could possibly happen and to keep my mind focused on something else. I think my body benefitted from my strength of mind. Even my family was surprised at my strong attitude, without shedding a single tear.
In the induction I obtained a complete remission; a word which is so sweet to hear. I still had 0.04% of the disease in my system but it was supposed that with the remaining cycles that would be dealt with. What was difficult was that my bone marrow took almost 30 days to recover from the chemotherapies. Some people get better after only 15 days. I was always anxious to get better to get on with the following cycle of chemo.
In July 2011, I left the hospital for good (touch wood). Between the different cycles of chemo the "freedom" had only ever been provisional.
Photos of Juan Diego's birthday, with his family between the second and third cycles of chemo. Juan Diego, with his sister, his girlfriend and his father.
Since the 30th of August I have been receiving the maintenance treatment which includes taking several drugs for two years. I have to take 100mg of Mercaptopurine, 1 weekly injection of Metrotrexate, 10mg of Vesanoid every three months, provided that my bone marrow stays disease free. However, if there was a problem then I would have to opt for a different route. The hardest thing is to wait for the punctures I receive every month.
Nowadays I go to the gym and I play the electric guitar; music is my passion. I can only do it when I feel strong enough but it is the best way for me to disconnect. I work in the house that I bought a short time before falling ill and little by little I enjoy what my body allows. I want to one day return to the excitement of playing in a heavy metal rock band in the same way I did a few years ago, let's say it clean my mind and body.
I will also revisit the wedding plans I had stolen by the disease, and if everything goes to plan I will marry the girl who has been my girlfriend for 18 years...how she supported me and put up with me I don't know.
Juan Diego today.
I would also like to try working in Brazil or Mexico if my work allows it, because it feels like the "ship has sailed" in Spain. Of course, a plan like this requires a lot of thought to get the right health, work, family balance and to see if it is worth it. One of the probable causes of this disease has been the stress at work I have suffered over recent years and the number of cigarettes I have smoked along the way; I can't see any other reasons.
Juan Diego with his girlfriend and his cousin.
Finally I would like to say a few thank you's: to my family for all their unconditional support; to my girl and future wife; to my haematologists and nurses at the La Paz Hospital; and to all my friend who have come to visit or call me.
To those who are passing through this at the moment, families and patients, I want to say that although this disease is long, stressful, and hard the daily fight against it and the encouragement of those around you make you stronger. In the end, the journey is worth it.
I would encourage everyone to become a bone marrow donor because you could save the life of someone who really needs it. I also invite you to become a member of the José Carreras Foundation to help them reach their goal of all blood diseases one day being completely curable. Remember that "until you have been touched by the disease" you don't really realize what you could have done for others with your solidarity. Don't let this moment pass, go for it!"