Alex Cevenini was diagnosed with acute myelogenous leukaemia (AML) on his 24th birthday, the 14th of April 2007. Due to complications arisen, he soon entered coma with little chances to live through. Thanks to the outstanding work of doctors and the hospital's personnel, and to the prayers of his friends and family, he woke up after about a month. In June 2008 his leukemia relapsed, and he continued to fight it always bearing in mind the other people sharing his same condition, and how to best help them through Beat Leukemia. Alex passed away as of November 28th 2009, but Beat Leukemia continues stronger than ever, with the hope to Beat soon and forever this dangerous killer still on the loose. The type of leukaemia that Alex got (AML M3, or APL) was incurable (nearly 100% mortality in just a few weeks) until just five years ago, when some researchers found a cure and spread the good news through their global research networks.
When I got my first strong headache, flying back from Cairo last April, I was just a little annoyed because I had never suffered headaches before and I couldn’t wait to get home. Cairo is a beautiful city, but very polluted and dusty. Add the burning sun and the walks up and down the pyramids and a headache is just what you can expect. When I got home in Milano I tried to check my mail but my head kept hurting so I decided to check my temperature. It was 38.5 C
I got an appointment with the doctor of a nearby clinic for the next morning, but I felt very weak, and I had a hard time walking to the place, just two blocks away. After he visited me he just assumed I had flu, because my symptoms were a headache, a sore throat and the high fever. He ignored the fact that I had never suffered from headaches before and that I was MORE TIRED THAN USUAL, and without good reason. This is one of the symptoms of leukemia, present in most cases. He gave me antibiotics and something for my throat, plus some drug to keep the fever down while the antibiotics could do their job. But the fever wouldn’t go down. I was taking these drugs in heavy quantities but they would only slow it for a moment and then it began its hike again. Even cortisone would not work; I soon got to 41° C and was quite worried. The morning after when I woke up I felt like I had been partying three days without sleeping. I was home alone but I needed to get up and go to the kitchen to get myself some water. On the way I turned the keys to unlock the door, I though it would be wise to leave it open in case anything would happen to me. When I got to the kitchen I just blacked out and fell, hitting my head against the iron side of the basin. I woke up a second later and found myself with one knee on the floor and my hands holding the sink. I drank some water from the tap, then I crawled to the phone and called for help.
The doctor was still puzzled and did not recognize the signs. I insisted that he admit me to his clinic because I had never felt like that before (never even had a flu in like 6 years!) and since I was coming from Africa I suspected I might have had some local disease. I was admitted on Saturday, April 14, my birthday.
After the blood test it was all clear: there were good chances I had leukemia. The doctor called the director of the hematology department of the nearby hospital who came in a rush Sunday night and managed to find me a bed in his ward, where unfortunately demand for beds is always higher than supply. Sunday night was the worst of my life because nobody would tell me what I had.
Up to that point communications were done loud in my room but when the Professor came from hospital Sunday night he called my parents out and it was long minutes for me. I wanted to know what I had and got more worried with every minute that passed. When the Professor came in he told me that my white cells were too high and he needed to take me to his ward for ‘more tests’. At that point I was seriously scared as I only knew a few diseases that involve increases in white cells, and none of those are nice and easy ones.
I was moved to the hospital the next morning and had a bone marrow check. So finally my new doctor came in and told me he had both good and bad news. I asked for the bad one first. He said I had leukemia, but the good news was that it was a curable form that did not imply a bone marrow transplant. I was happy to hear that and suddenly relieved. What he did not tell me was that that leukemia had developed fast already and I had infiltrations in my lungs, and the high number of white cells was accompanied by a very low figure for what concerned platelets. These things together qualified me as high-risk profile. The situation was made even worse by the fact that my Acute Myelogenous Leukemia (AML) M3 was in a rare form that develops even faster than normal and mutates so that doctors have a hard time making their diagnosis. While I was finally quiet in my room, my parents were called in the Professor’s office and informed that I was doing very bad and they could expect to lose me very soon. They just could not believe his words.
My relief didn’t last for long; from the following day a black spot appeared in my left eye and began enlarging gradually. In two days I had troubles breathing and didn’t know why. A CT scan showed massive infiltrations in my right lung, which quit working just a few hours later. My respiration was first aided with a C-PAP, a sort of helmet you wear with oxygen coming in. I was asked to raise my hand when I could not breath anymore, and then it was blackout. I was put to sleep and stayed in coma for nearly a month. It was probably the worst night for my parents and my brother because they knew nothing about leukemia and it was hitting them like a huge wave in an otherwise calm ocean.
I was sleeping on the bed while they transported me to the intensive therapy department. This is probably a bad thing because going to intensive therapy means you’re not doing great, but at the same time, if you had no chance they wouldn’t even bother to take you there, right?
There I was attached to a fixed ventilator and other devices to track my state and only left intensive therapy to go and do CT scans every now and then to monitor the situation.
It was very long days for my parents, my brother and the friends outside. I have no memories of it except ugly nightmares and hallucinations caused by the drugs they used to make me sleep. They decided to try with a massive attack of chemotherapy, a hit or miss maneuver, as I was too weak already to stand it. The chances were extremely low, and I guess they did that just because I was young. I can only imagine how happy they’ve been for not having lost hope when they saw that I reacted strongly and positively to the therapy. I was told that everyone got very passionate about my case because when I got in there they were prepared to just see me ‘leave’ in a short time. That’s what they told my parents: “we have seen many people move from hematology to intensive therapy, but we’ve never seen anybody go back”.
After a few attempts to turn off the respirator and see if I could make it on my own, (I think it was at the fifth attempt) I finally made it so they let me wake up. I had no idea where I was or why, but the people around didn’t seem hostile so I wasn’t very much afraid. I couldn’t see much because the potent drugs made my vision blurred, but the good news were that the black spot was gone and I could see again! My brother came in and he told what day it was, and when I heard it was May I was even more puzzled.
The director of hematology, who has a years-long experience and has seen so much happen, said that given my initial conditions he would have never bet that I would make it. Of course they won’t give up the fight until the end, but he says that when he saw me awake and doing ok he thought it was a miracle. I was actually 30 kg below, couldn’t move a muscle, and I was far from being safe, but that was already a great result. I still had a respirator helping me, and it was a conquer made of small steps to gradually remove all aids and breath independently again. (One note to those who read this and smoke: please reconsider your choice now that you know what a great gift a pair of healthy lungs is!).
The days in intensive therapy were ok because nurses were all about my age so they entertained me, and one doctor even loved sailing so he brought a TV in the room and we watched the America’s Cup together. The nights were quite bad because of the drugs. I still had hallucinations and they were worse during the night. One day this same doctor said that I should try and eat something (I was fed via infusion up to then) so he fed me a yoghurt to see if I could swallow it and digest it. The sensation of eating it is indescribable. Believe it or not waking up from coma was for me like being rebirth and I had also forgotten that people normally eats food! That yoghurt tasted like the best food in the world to me.
After about a week I was told that I could finally go back to hematology, and I was happy because that meant I was improving. I spent my days in hematology eating again and doing much rehabilitation because when I came in I couldn’t move anything except a few fingers and my neck muscles. It was a real challenge, but I was gradually improving. When they turned me to sit straight my head spun badly like I was just back from the moon. Lying down for too long is apparently bad for you.
So everything was finally going great, finally!
But one night, after dinner, I began to feel very weak again and my belly hurt badly. My dad was there (there was someone with me 24/7 as I still could not eat by myself or get up) and he called the nurse. I insisted to call a doctor because again I recognized it was serious. Then I blacked out, it was a cardiac arrest and I woke up a few moments later with the doc who had arrived and was pumping with his hands on my chest. I shouted hey hey hey! I’m back I’m back! :)
The doc thought it was probably an internal hemorrhage and I told them I thought it was in my intestine from what I felt. We’ve been rushing around the hospital to do several exams to localize the hemorrhage while I received infusions of new blood on the go to replace that that I was losing. After some 4 hours they said they found it was the upper part of the intestine and they should operate it to remove a part and fix it. It wasn’t really a question I guess but I said it was ok. So I went into emergency surgery and it was blackout again. I woke up in intensive therapy with a nice lady telling me that it was 9:30 PM (right, what month this time??:)
I went through the always unpleasant process of removing the tubes in my throat and after only two days I was back in hematology again.
Up to here I had been always upbeat and accepted the fight, it was after this episode that I began to have fear. I was so happy of the work I was doing with rehabilitation and now I had to start all over again, and what would happen next?? It’s in this moment that the director comes into my room and says that I have to be strong because soon I’ll have to start with the new cycles of chemos. What the..???? What chemos? I didn’t remember much of before and I was being told everything about my condition once again cause I had removed the first few days before the coma from my memory. This was horrible news in a horrible moment. So it was not over? I had to go through more ugly stuff?
It took me about another month in hematology before I could move all my muscles and even stand up and walk! I remember that my doc had told me I would have walked again in two weeks time, and one night I dreamed that I could walk for real. My first actual walk outside was news in four departments for weeks. They were all so happy that I had made it, and so fast. When my values were up and I was okay, they let me go home for one week to rest and especially comfort my mind seeing my home and my family.
From July to September I have been through the ‘normal’ therapy for my type of leukemia. Fortunately it didn’t involve a bone marrow transplant. I had to go through three more cycles of heavy chemos and take some pills of ATRA, a derivate of vitamin A. Before ATRA was found to cure AML M3 in 2002, AML M3 had mortality rates close to 100%, now it is probably the least worse you can get (unless you run into the complications I did run into). This is why research is really so important. Patient assistance is paramount as well, because leukemia patients have to stay closed in sterile rooms for weeks (or even months in the case of transplant) and if I didn’t go insane that’s because my nurses did an exceptional job entertaining me. This may sound like a plus, but it’s not. This type of patients need constant care and psychological support, especially if they’re young.
Each of my following cycles of chemos were not like one can imagine. Of course, like everybody, I just tried not to annoy the people who was calling or writing telling them the truth about how bad it was. Most people won’t tell you the truth about how bad this thing still is. Each chemo cycle is bad and each is dangerous. When your defenses are down almost anything can attack you and easily KILL you. Every time it’s a race with the doctors giving you antibiotics and monitoring your values and praying that the values restore soon so you can neutralize the infections. Chemos have improved a lot, as well as transplant, but there is a new frontier of ‘clever bullets’, that is drugs that only aim at the ‘bad’ cells instead of destroying all the organism. In the last 10 years the chances for leukemia patients to survive have improved dramatically, but not thanks to those who think it’s just impossible and easily label a disease as ‘incurable’ until it happens to them. Research has come a long way, and this adds to our motivation, but there still is a long way to go. Too many people of all ages still die, and too many suffer badly for the treatments. I think we can really make a difference in this if we only believe it.
Alex Cevenini.
www.beat-leukemia.org
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