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.
Monday I had the heavy chemo in the hospital and I could ask about the new lump. Unfortunately there was no professor there, only an assistant, which is not bad of course but a professor should have a lot more experience. The assistant told me not to worry too much, it could be some scar tissue from the biopsy, reacting with something else... But of course I still don't feel quite at ease with that little lump, which has grown a little since last week. So I've sent an e-mail to one of the professors but without seeing it he could not say anything about it, so I'll have to wait untill next monday.
I hope they will find some explanation to put my mind at rest. And if they don't, I hope they will do a new PET/CT as soon as possible.
Untill now, I think I'm suffering a little less than last month, so that's the good news. I hope it won't take as long as last time, then I could be suffering untill monday.
Some of you only know me as a cellist, but I'm also a percussionist! I'm in a percussion orchestra in a really small village near Mechelen, Zemst-Laar. Yesterday we participated in the World Music Contest in Kerkrade, Netherlands. We were the winners of the day, with 90,10%! Now we have to wait for the second percussion day in the contest, the 31st of July. Then we will know who's the champion! I'm very happy I could attend this competition. By coincidence it fitted well in my chemo-schedule. There was another Belgian band who finished just a bit below and there was a nice friendly-competitive atmosphere ('t is stil aan de overkant en van die dingen ).
So that offered me some diversion from the treatment. But there's also one thing bothering me. Since a few days I can feel a little lump (bobbeltje) in my neck, at the place where the big lump used to be. It's only about 1cm, but it's strange because I couldn't feel anything there for some weeks. On the last scan I could see a lump about this size, so maybe it's just this, but I wonder why I couldn't feel it before. I think (hope!) it's very unlikely that the lymphnodes would grow during the treatment. Especially if the treatment is so definitely working... I'l have to ask the doctors but I'm afraid they will only do a new scan after the next chemo (these scans are very expensive and maybe not that healthy as well, unless I want to be radio-active man)
Monday I will go to the hospital for the third and very heavy infusion (if my blood's allright). I'll let you know what they think about it.
The treatment started without any real problems. The doctors are now talking about the stem cell transplantation a lot because that might be coming closer. There are three possibilities: 1. I won't need a transplantation, that means the disease would be really gone after the chemo. 2. They will do an "autologic" transplantation, using my own stem cells, if the disease is not totally destroyed by the chemo. 3. They will do an "allogeneic" transpantation, using stem cells of a donor, maybe one of my brothers. They do this if my own bone marrow doesn't give enough stem cells.
I'm hoping for the first, because a transplantation is not without risks, and then I would recover sooner. The doctors also said they will probably give one more treatment after this one, possibly without the last (very heavy) infusion. I guess that will be finished around the end of August. So that could be a possible end of the treatment. Or, with the transplantation, about one month later, but with a long recovery to follow.
Reading this message again, I'm afraid it's very technical and a bit complicated, sorry for that! Hope I could keep your attention :)
Monday night I had to go to the hospital. I had fever since the evening before and the doctors wanted to be safe, and it appeared they were right... Only yesterday in the afternoon they let me go. It was four days of sweating. The temperature outside was about 29° C. The first days I had a lot of problems to eat, only the thought of hospital food made me nauseous, but then I discovered I'm not the only one with this problem and they have dietists in the hospital to help those people out. We can choose a few other dishes that aren't made in the hospital. Very basic of course, like toast ham cheese or ravioli out of a can... But it helps. Also, my girlfriend brought me some real food, some pistolekes (that's what we call them in Flanders, a kind of little breads) with good cheese and some fruit. Thank you, baby!!
Monday we start the chemo again. I really hope it's the last one, and it might be because the doctor said they will take stem-cells after this treatment.
So, I'll start enjoying my two days before the next chemo. Fortunately, the weather still allows me to!
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