On the PET/CT-scan they could see that the lump at my neck is the only place where the cancer is still active (but very active it is!). This means they can do radiation. That means new hope, so it's very good news. And there is more. There's a new kind of medicin that can help your stem cells to come out of the bone marrow, it's not registered yet, but the results untill now seem to be quite positive. So maybe they can still collect my own stem cells. The results of the blood test of my family can take some time to find out.
The thing is, they will not start radiation before next week, and the lump is growing very fast. I hope it's not going to hinder me too much during the next days, because if it keeps growing like this, it will become bigger than ever before. The radiation itself will not be unbearable, not like the chemotherapy at least. Tomorrow they will make some kind of mask, to use during the radiation sessions, to keep my head and shoulders steady.
Some diversion once more. After these tense moments some of you might remember that our Percussion Orchestra participated in the World Music Competition in Kerkrade. Well, we won it! So we are officially World Champion for the next four years!!!
I want to thank everybody for all the positive messages you sent me, it really means a lot to me!! And I want to ask you to keep your fingers crossed from time to time, because of course it's not quite over yet!
I went to the hospital today to collect stem cells, but I didn't have enough... And, they know they won't get enough for now. Maybe they can try to collect again after another chemo, but for now they're not planning to give me any.
The doctors think I have a very refractive Hodgkin-lymphoma, which means it reacts to the chemo, but only temporary, and starts to grow again after a while. This happens to 5 to 10% of the Hodgkin-patients. So, because chemotherapy is not really working against this cancer, they can try to cure it with radiotherapy, followed by a stem cell transplantation, which will now be allogeneic (from a donor). They need to do a new PET-scan next Tuesday and then they can see if radiation is possible. (everybody fingers crossed!!!) My brothers and parents will go to the hospital monday to test their blood, to see if someone is compatible. (again fingers crossed!!!)
So, this is the verdict, at least untill now. There's a lot of "if's" and I really feel I have to get through the eye of a needle. Of course there is still hope, but this story will end in a real thriller. I can really do nothing but hope. The rest seems to be pure coincidence, and it's beyond my powers to have any influence on it.
As I am physically quite okay, I will try to enjoy this period very much, not to think too much about the future and live day by day. I don't have the prospect of another chemo, and that's about the only positive thing I have to say today :s
The end of my disease was in sight. It was becoming quite a long story, but with the prospect of curing, everything seems more bearable. My disease decided to make it even longer and a lot more uncertain...
Yesterday in the hospital was a horrible day. The psychological effect of the hospital is getting very strong, I was very nauseous and had to throw up three times, also because I was still not entirely recovered from the last chemo. I was very happy my mother joined me there. She took me outside for lunch because it seems I can not eat in a hospital any longer.
About the lump they could not tell me anything yet. They don't think it's scar tissue, because it's getting bigger. They will talk about it on a general meeting of the professors on Thursday. It's possible they will have to do another biopsy (would be the third). So friday I will know more. They also decided to collect stem cells on friday. This week I have to get two injections a day and friday they will try to collect the cells with a special machine. It seems they will have to place another catheter for that, with a local anaesthetic.
