On monday I had a bone- and bone marrowpunction, and Tuesday I had a PET-scan. Today I had the results of the scan and partially of the punction, which was very good. They can't see any cancer. Because I've been feeling great lately, I didn't have much to fear but these tests will always make me feel nervous. As long as I'll have them. So I have every reason to be very happy and of course that's a wonderful Christmas present!
During the last few weeks I didn't feel very well. I was still very tired and got some arthritis which was very annoying and painful sometimes. This was going on for more than a month and last monday the doctor said it was due to the GVHD (graft-versus-host disease, you can find it on wikipedia). So they decided to restart the steroids... and of course I feel much better, actually I feel really well since Tuesday. But I'd rather stop taking these pills, because the long-term side effects can be even worse. So, it's a bit double.
Since September I am following a recovery program at the hospital, especially for (ex-)patients with hematologic diseases. This is very helpful. We do exercises for the muscles, flexibility of the joints and endurance, and I really need it. Before we started, I did a cardiac stress test, and apparently, I had only 49% of the strength of an average 26 year old guy... I produced 160 watt, whereas a few years ago I know I could produce 300. (this has nothing to do with the 49%, because then you might think I was already weaker than the average guy before :) the calculation is a bit more complicated)
So, you are informed again. I have the feeling that it's hard for a lot of people to understand how I feel. This recovery takes a very long time. I can do a lot of things, I do look alright, and for some people that's a reason to think that I'm my old self again. But it's not. I'm doing alright, I'm about 70% of my old self (at this moment) and it could take some more months to get back the last 30%.
About my uncle, he had a very beautiful and emotional funeral. I played two songs with my brother. It's strange to know that he will never read this blog anymore, because he was one of my most faithful readers. Well, I'm not much of a believer but maybe... never say never.
It's been a very long time and actually, I don't really want to talk about myself today. My uncle died on Saturday. He was on his way to a football match of his favourite team (KV Mechelen), by bicycle. Someone opened the back door of a parked car and he couldn't avoid it. He fell in a very bad way on his head and died the next day. He posted quite a lot of reactions to my blog, his name was Geert, but he signed "nonkel geeraard". He was always very supporting! He leaves a daughter of nearly 16 and a lot of friends and family who loved him very much.
I needed to mention this before I can talk about myself some more, which I will do next time. Soon, I promise.
The week in 'La Provence' was very relaxing! I really felt recharged! The strange thing is, when I went back to the hospital, my blood results were worse than before I left. Since then my hemoglobine level has been around 9. Yesterday it was 8,6 and since last week I feel more tired too. This is probably also due to the reducing of my Medrol (cortico-steroids or methylprednisolone to be precise :)).
So actually I'm quite fine. It only worries me that the quality of my blood has not improved during the last three months. It makes me wonder how long this recovery is going to take!
Some of you might remember that I was very unhappy one year ago because I couldn't go to the Provence. Well, this year the doctors let me go!! Tomorrow I'll be on the TGV to Avignon and I'll be in this wonderful and relaxing place at the foot of the Mont Ventoux for a whole week! That's the longest time I've been away from home since I came back from Budapest.
On Monday my results in the hospital were already much better, and yesterday I had the same positive news. My hemoglobine level is around 9 now, which is low for normal people (should be between 14 and 18), but I'm very happy with that because it's still going up. It feels so much better than the past two months, and I think my heart is very grateful too. During the worst days two weeks ago my heart was beating more than 110 bpm constantly, even at night. I'm lucky to be still young, the doctors said, because for older people, this situation could cause an infarct. But all these troubled times have passed now. I look ahead and hope this is the start of my full recovery! What else can I do?
I wanted to tell you earlier, because only a few know that I was in the hospital the last 4 days. But the Intensive Care doesn't provide a lot of facilities...
I already told you I felt very tired the last days and on Monday I felt really exhausted. My mother called the doctor and she told us to come to the emergency entrance right away. What they saw in my blood must have frightened them, for they were really serious. (Hemoglobine: 4,4, LDH: more than 1000 and Bilirubine more than 2 (in case I have hematologists amongst my readers) it means that something was destroying my red blood cells quite thoroughly) The biggest problem right now is my blood type. It's really difficult to find matching blood, and if they hadn't found the right blood, I would have been in deep trouble. I can tell you, it's a strange thing if the doctor asks if they have to inform my other familymembers, if there is someone I'd want them to call... She literally said they were not sure it was going to be alright.
Tuesday I could change from the Emergency Room to the Intensive Care. They also had good news. My blood was getting better. And until now its still getting better. I still have a low Hemoglobine level, but the other results were reassuring enough to let me go home, to come back on Monday. Oh yeah, I'd almost forget they also did another PET/CT scan, because there was a chance that all this was caused by another lymphoma, but the scan was very good!
So now I have to wait again... Hoping that whatever caused this trouble will not come back. I said I was hoping to give you better news and now I come with this... At least it keeps things exciting :s
It seems that this virus they were talking about is not the only thing. My hemoglobine level is still too low and since a few weeks I have some symptoms of jaundice (geelzucht). Apparently something in my blood is trying to destroy my red blood cells. This is (again) quite rare, but that doesn't surprise me anymore... They will try to cure this by giving me Mabthera, something I had before during chemotherapy. I try to believe this will work, but they don't seem to be so sure themselves. There's an audition for Brussels Philharmonic on the 12th of June, but I'm afraid it's too early. That sucks, because I'm sure that in my best condition, I would have a chance. But when will I be in that condition again?
I'll say it again: hope to have better news next time!
Things aren't super, but I'm okay today. Friday they told me I have probably some virus that is quite harmless for healthy people, but for patients like me, it results in not producing red blood cells anymore. It can take a few weeks... They gave me two more bags of blood and I had to come back on Tuesday. These days in the hospital are always too long! First they take blood. The results of the tests come after 1,5 hour. Then they see I need blood. They have to order it, this takes more than one hour again. If the blood is there, they do a test to see if I will not react badly to it. If so, they order it again... Giving one bag of blood takes more than two hours. So Tuesday was such a day and I had to come back on Wednesday, because the blood came too late. But even when the blood was there waiting for me yesterday, I spent a whole day in the hospital.
I really hope this virus will be gone soon, so I can write happier stories for you!
I haven't been feeling very well during the last month. I felt tired and sometimes nauseous to. The first time I mentioned that, the doctors couldn't find anything in my blood and they thought I felt this way because of the reduction of cortisone. They thought they reduced it too quickly so I had to start a higher dose again.
Two weeks later I didn't feel much better, and they saw in the blood results that my red blood cells were low. They told me I'd probably had some kind of infection, but they gave me some extra blood and thought it would be better soon.
Two weeks later (yesterday) I felt worse again and my red blood cells were even lower than before. They decided to give me two more bags of blood. My body reacted quite heavily to this and I started to shake and got fever. After I got better they let me go home at my own risk (you know I don't like to stay there at night). Today I had to come back for the second blood bag and some more tests because they finally decided that something wasn't right. It might be something viral. They also did a bone marrow punction, which was quite unpleasant, and an eye test. Since a few days there's a blind spot somewhere in my left eye. The ophtalmologist said it can happen when you're red blood cells are low, but usually it disappears.
So, the cancer is gone, but the recovery is still going on, and can take some more time... I have to go back to the hospital on friday. If they have some new results, I'll let you know!
