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Back home

Last Tuesday I got out of the hospital. I could not be any happier knowing I have not seen my room (or the interior of anything but the hospital chambers) since May, when I got admitted for the transplant. So…let’s count; from the 12th May to the 23rd September, that makes 134 days in the hospital. 134 days…wow. It’s hard even for me to believe it. 134 days; that makes 3216 hours…192 960 minutes. Enough with the math. I won’t bother you with these details. I want to write a bit about what happened during these days. I feel responsible to tell you, my friends, about how everything went and the final result.

As I had written before, I got admitted on the 12th May at the Saint Antoine Hospital under the supervision of doctor Rubio Marie-Therese, the main transplant coordinator. She is an amazing doctor, very caring, professional and really good at what she is doing. Of course, on the same day there was an exposition at Les Invalides about the musketeers and I had to go. I went to the hospital afterwards. (Here’s a pic of me and cardinal Richelieu)
IMAG2203 So far so good. Everything was properly planned. The transplant was going to take place on 28th May. Before that, chemo that destroys my immune system…all of it.
I lost all my hair, again. But this chemotherapy was harsh. I mean…it was ten times more powerful than the normal ones;  but I did not complain. Why should I? The doctors let me bring my little piano in the room so I mostly played and did puzzles. One of the good things about french hospitals is that the rooms are big and nice so I was able to bring lots of stuff from home. The bad thing was that I got aphthaes (ulcer in the mouth) again only this time it was so powerful I could not eat.
They took me to get a catheter because for the transplant a catheter is needed and they also put a probe from the nose down to my stomach. It was sooo unpleasant. So I vomited it a few days later. That thing was kind of important because after the transplant a man can’t eat and that probe is used to feed the patient.
Eventually, the big day came. At about five, the magical bag arrived. Now, contrary to the popular belief, a bone marrow transplant is not some tricky surgery, but a simple transfusion, like a blood transfusion; the nurse came with the marrow bag. It was pinkinsh and weighted 250 ml. Everything lasted half an hour. That was it. Half an hour and the transplant was done and my leukemia was starting to be over. Pretty amazing, huh? Now, my story would be great if it ended here, only it doesn’t. The bad things actually start here, but to calm you down, most of the things that happened to me were normal after the transplant.
The first thing was the fever. I had fever. Not so bad. The aphtaes were still there and, of course diarrhea. As a bonus, I was good at vomiting as well. Afterwards, something unpredictable happened. My oxygen saturation started going down, so I got those nose tubes that help you breath. But it did not end there. One night, I woke up not being able to breath…like…I could not breath. The doctors from hematology had no idea what to do so they sent me to the Intensive Care. Now, I do not remember anything from the days I spent there, most likely because I was knocked out. Seriously, I do not remember anything. I just know I spent a good week at the Intensive Care Department. It is not so normal after the transplant. Actually, it was quite a big problem and the doctors were…kind of hopeless. These are the moments when you see and feel the hand of God in your life. Nobody had any idea what could they do to make me better; the doctors were just…doing nothing because they had no idea what to do. God woke me up. I remember being intubated and not being able to drink so I was thirsty. But I got better. I know God made me better. So I could go back to Hematology. And the good news came: the bone marrow was clean, the transplant was successful, NO MORE LEUKEMIA. The only bad thing that happened ( and I still have it) was a neuropathy at my right leg; this means I can not use my leg, I cannot walk.
My birthday came. And all of you, my friends, surprised me with “Alida, te asteptam acasa” and “La multi ani Alida”. Thank you so much for your videos, for your messages and especially for the hard work you put to make the party from home possible. I saw the pictures and the videos and I think it was great. My folks bought me a chocolate cake ( from Picard, because food from any place else was forbidden ) and the nurses were nice enough to order at the hospital kitchen an apple pie, as a present. They were both delicious. And thank you Timi dear for coming all the way from London for my birthday. It was a huuuge present.
The next thing that happened is not so pleasant; it was the digestive gvh. It is a reaction due to the transplant and all my digestive system was screwed, so I was not allowed to eat at all. And this torture continued for five weeks. Can you imagine? I could not eat anything! For five whole weeks! It was the most horrible thing that has ever happened to me. But finally I got better and step by step I could eat. But I still could not walk. I was doing kinetotherapy. The doctors sent me to la Pitiė-Salpetriere Hospital to the best specialised neurologist in France so he can test my leg for this neuropathy. The result? “Ça passera tout seul” (it will pass by itself).
We are getting close to the finish line. I started getting better, taking walks in the hospital yard with a chair and so on. As a result, last week the doctors let me come home (YAY) with a ton of drugs, but it is home…and I get to eat a lot ( fast food not allowed, fried things not allowed but still…) and take walks. I went to Parc de Sceaux and I also went shopping for shoes. Not bad for a girl that weeks ago was in the hospital, right?
My dear friends, sorry for the long post, but it has been a while since I’ve been writing and I want to keep you updated. Now I go to the hospital twice a week for blood tests and other stuff, but the important thing is I no longer have leukemia. This is the proof that if you are surrounded by love, family, a team of good doctors and most important, you put your trust in God, there is no disease too hard to defeat.

4 thoughts on “Back home

  1. I accidentally found you through a long round about trip online…I can’t even remember what link where who/??…but I never, I mean never do this, I read about your transplant and just wanted to tell you I am happy that you, someone I didn’t know 10 minutes ago are alive and working though a horrific illness. Your story is amazing and will inspire others. Thank you

    • Wow. Thank you a looot! This made my day (night actually…). It has been a long journey but I’ve learned some priceless lessons. I hope I’ll be able to share.
      Thank you again and hope to see you another time on my blog.

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