Update September, 2014
My name is Celeste Sabagh, I'm 28 years old and I live in Argentina.
I would like to share the story of my life, which is a story about joy, extreme sadness, disillusion, hope, and joy again! I want to make it public, because I believe no one has the right to determine what will happen to you: will you live after being diagnosed with brain cancer? If so, how long? Under what circumstances will this happen?
In a world where radiation and chemo are the only accepted and recommended therapies in order to "survive": what happens if unconventional and non toxic treatment is the way out? THIS is what happens: (sounds like a movie trailer!)
Before being diagnosed, I was a very happy young girl. I was studying Economics at college, working, traveling a lot, going out with my friends, enjoying my nephew and my family, driving…all these things, I took for granted…
Until on February 2011, when I was 24 years old, I started having some symptoms that couldn't handle: double vision, pain on my left knee, weakness on my left leg and left arm, vomiting after eating, and strong headaches. In March 2011, after seeing several doctors that couldn't find out what was happening, I was finally diagnosed with brain cancer: I had an inoperable brain stem tumor, a DIPG – Diffuse Intrinsic Pontine Glioma.
Doctors gave me a very bad prognosis and therefore planned 45 days of strong radiotherapy, together with high doses of chemo (temozolomide), and then a couple of months of just this drug. I could handle radiotherapy (which reduced the size of the tumor by half), but the oral drug (chemo) was too strong… I started feeling more and more tired, muscle weakness, decreased appetite, dizziness, nausea, mental depression, trouble sleeping. I had hair loss; and needed a lot of blood and platelet transfusions.
There was a time I spent most of my days hospitalized. My oncologist, the most insensitive person in the world, kept increasing the dose; and when I asked her about my future, she said I would probably live 2 more years, "like statistics show". This was in August 2011. Until I said "enough is enough". Why should I go through such a big suffering, if I was not going to make it anyway? I then quit chemotherapy and never again saw this dreadful oncologist – whose last name in Spanish means, ironically, "of bad quality".
When I quit chemo, I was feeling very down, because I thought I had nothing else to do. In November 2011, I travelled to Houston because I had an appointment (made by my family, who were always investigating new options) with an oncologist on the MD Anderson, who should have already by then seen my last MRI's, because we had send them before; and I had a little bit of hope, as this is a renowned medical center, worldwide. But no, he hadn't seen my past MRI'S. He made us fly all the way from Argentina, to make us wait 3 hours, and then he received us in his office and said that there was nothing to do, and that my prognosis was really bad. That was it.
So I had absolutely no hope at all. Those were the worst days of my life. I woke up each day surprised I was still living. That Christmas was so sad. But I kept on smiling, because I thought those were my last days with my family, friends, and my little dog, Amado, a gift from my father to me. The most beautiful gift I ever had! When I felt depressed, he stood beside me, watching me or snoring by my side. When I was vomiting, even at 4am, he came with me and stood by my side. Always by my side. He's my therapeutic dog. Another guardian angel, this time smaller and furrier!
So I came back to Argentina, absolutely hopeless, with the certainty that those were my last days. This was November 2011, and I'm writing this story 3 years after this! What happened then is, some friends say, a miracle; I like to think it is a miracle pushed to happen, caused by the strength, determination, and love of my whole family, especially my father, who's my guardian angel in life, not to mention some incredible, really human doctors, and caused by all those who surrounded me and helped me in one way or another.
When we came back to Argentina, my family then acknowledged there was a clinic where they did experimental treatment in Houston, ironically, near the MD Anderson. So they sent all my studies to the Burzynski Clinic, where doctors did have a look at them before they asked me to travel. So we flew to Houston again! I thought there was nothing to do. I was convinced, because other doctors had told me so, but I went just because my father asked me to. In February 2012 I was at Burzynski Clinic, being taken care by excellent doctors and great nurses, and I had hope again. "Where hope exists", that's the clinic's motto. It's absolutely true.
After the FDA finally accepted my treatment, I had the catheter inserted, and my father learned how to administer the treatment on myself. After a month, my father, my guardian angel and now nurse, learned everything needed to administer the Antineoplastons (ANP) through my catheter, so we flew back to Argentina. Each morning, my father woke up early to prepare the doses of Antineoplaston I needed, and my mom was in charge of cleaning and changing my dressing once every two days.
I must say, it wasn't a piece of cake; instead, it was hard sometimes. Mainly on special dates, such as the wedding of my best friend: it was always me and my pump. And besides, I could barely walk, and I felt tired and sleepy. But I kept on smiling, this time because I had HOPE.
Even though I was in Argentina, I was being constantly monitored by my doctors at the Burzynski clinic, and I had a personal doctor here that helped me with my daily inquiries. He's more than a doctor to me: a loving friend, another guardian angel. So I was surrounded by love, and doing a non toxic treatment; and, most importantly, I had hope, so I was determined to heal. As time went by, and my MRI'S showed stable disease (which is awesome for a DIPG tumor, that grows very quickly), the ANP doses were being reduced as prescribed by my doctors at the Burzynski clinic. I started to have some hours "free" between one infusion and the other, were I left the pump home and went out with my friends. Meanwhile, Amado looked after my pump!
I finally finished ANP treatment after a year and a half, as all my MRI's showed stable disease, and I was officially in remission! As soon as I could do without the pump, I started a really intensive physiotherapy treatment with a team of incredibly professional and perceptive kinesiologists directed by a wonderful Neurologist. He saw my MRI'S and told me I could live a normal life!!
So I was off the pump, and had a strong will: I was determined to walk alone again, to drive again, to study again. For the first time in years, I was looking ahead to the future and had dreams and plans!!!
Gladly, this started to come true… September 2013, I got my driving license back! I was beginning to recover my independence again. But there was one more important thing: walking alone on the street. Because when I drove, I felt wonderful, I had the control of the situation; but walking was difficult as I had no balance, and was afraid. However, my kinesiologists helped me through: after hard work, I finally got encouraged to walk alone on the street!! First, it was just a few meters. Now, I take long walks, mainly with Amado, and I'm not afraid anymore!
I now appreciate all these things that I took for granted before being ill!
During May 2013, while I was doing the ANP treatment, I started studying again; I had 4 exams left to graduate as an economist. The reason I did this is because I had hope and faith in this treatment. A few friends helped me with my studies, because it was very difficult to sit down for hours and concentrate again.
One year after, in May 2014, 10 months after finishing ANP treatment, I finally graduated from college!!! It was one of the most beautiful days of my life, because it meant a lot of things: it meant we (my family and I) had gone through a terrible nightmare whose destiny seemed to be the worst ever, but had managed to overcome disease and prognosis and statistics and turned it to a beautiful celebration!
Two days after graduation I was working again!!! And 10 days after, I started a postgraduate course!!!
I am now back to my life!!! I'm enjoying every second of it, knowing how valuable life is, how precious each time can be and how important it is to take pleasure in every single moment, every smile, every hug with a friend, every meeting with co-workers, every laughter with my nephew, every moment. I dream of my little princess: upcoming niece.
All you need is family, friends, love, and comprehensive and open minded doctors!
I'm not a hero or wonder woman. I'm just a young girl who fought against a terrible disease AND against very insensitive people, who struggled together with family and friends full of love. I want to spread a message of optimism, because no one has the absolute truth, and no one can determine what will happen to you.
Life is a labyrinth with many possible ways out: when it seems you are completely lost, there will always be a different path. Maybe it is new, or maybe it is not traditional, but as long as it does no harm, what can you lose? We have the right to choose our own path. Don't ever let anyone say it's impossible. When I feel I'm stacked, I say to myself: "Lo difícil se consigue, lo imposible se intenta".
Who knows for certain what will happen to me tomorrow? Who could imagine I would be feeling so good after Doctor-bad-quality's and Doctor-renowned-Anderson's prognosis?
And finally, is it worth fighting and suffering and swimming against the tide? Yes, it is. Because I can now enjoy my present.