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!
Just a message to let you know that things are going better. The medication for the cramps in my legs and fingers is working quite good. The first medication for the spasms in my chest was very effective but had a little too much side effects and now I have a new pill with no side effects, but a little less effective. But okay, it can't be perfect...
Wednesday is the first big test since the transplant. If the PET/CT would be negative, that would be the first real proof that the therapy has done the things they wanted it to do.
It's been a while, but I waited until I had some information to give you. Today, like every Monday they tested my blood and again everything was okay. The problem with the pain in my chest is not over yet. After the gastroscopy, they decided to do a CT-scan, but they couldn't find anything there either, which is very good news because the doctor said that if the Hodgkin would be returning, they should also be able to see it on that scan. Because all these tests were negative they now think the pain is due to spasms of the esophagus (slokdarmspasmen) and I have to try a new medicine for that. Another problem I've been having lately is muscle cramps, especially in my fingers, which is very irritating because I can't practise like that... They prescribed a kind of tranquilizer... Let's hope it works, because the doctor said this problem will last as long as I have to take all my medicines.
So, overall everything is moving into the right direction! I hope the smaller issues can also be solved.
The gastroscopy today was not very pleasant indeed, but it took only 5 minutes. They didn't have to give any anaesthetics, so afterwards I felt ok (yes, I'm a bit proud of that :)). They didn't see big problems but there is a small infection in the esophagus. I have some medicins for that now, let's hope it will work.
My blood results were the same as always, very good. The balance in my bone marrow is more than 95% of my donor, which is also very good! So, I think that means we can be sure the transplant was successful. Now we wait for the PET/CT-scan to see if there is any cancer left, but that will be on the 10th of March.
As you could expect, today in the hospital I complained about the things I mentioned in my last message. (first they kept me waiting for almost 4 hours, so I was in the mood for it!) They seem to take the pain in the chest seriously. It has probably something to do with my "esophagus" (google translation...), it's the thing between your throat en your stomach, you use to swallow (de slokdarm dus :)) And that's why they will do a gastroscopy next week. Not really looking forward to that, but I don't want this pain anymore. For the other complaints, they blame the medication, especcially the reducing of certain doses. Let's hope that's temporary.
My blood, again, was alright! Hopefully next week they will be able to tell what's the balance in my bone marrow between my own stem cells and my donor's. They took a sample for that 2 weeks ago, but the test seems to take very long.
Things are going okay, but I feel a little less, the last couple of days. I don't have any energy and I'm a bit worried about a kind of pain I've had in my chest. I feel it now and it's the fifth time since I left the hospital, and the last time was very painful. Last week, I was lucky to be in the hospital when I felt this pain. They listened to my heart and lungs and they took an RX, but they couldn't find anything. So, they said it was probably nothing really serious but if it happened more often, they would have to do more tests. Monday is my next appointment, and I hope they will do it.
This message is for everyone but I have only information for Belgians. Some time ago, (when they couldn't find a match with my stem cells in my family) a lot of people asked if they could do something. Now the Belgian Red Cross is looking for stem cell donors and of course I can only encourage every single person to register. You might save a persons life one day.
Some of you have been waiting for news, but actually there's not very much to say. Since I left the hospital I've been back for a check-up twice, and both times everything was okay. My blood results were very good and I haven't been ill either.
I spend my time trying not to be too bored at home. I play a little cello. Everyday a little more, but there is a lot of work! I read a lot, watch some dvd's, play with my Wii :), get friends for a visit, and that's about it. I'm happy I can do these things instead of lying in my bed all day, which could have been possible after such a treatment. But as you can see there's nothing very interesting, that's why I don't update my blog too often. I really don't want you to get bored!
I'm finally home since two days now. Feels great! As you all understood, this is to be a new start. But of course also the start of a long recovery. The difference with the recovery of normal chemo is that this will be much, much slower. The two most important things being my immune system and my energy level. It will take about six months untill I can relax a bit about what I'm eating (there is soo much I can't eat! :( ), whether I should go to public places, and things like that. Until then, I'll have to take a lot of pills to avoid rejection (the donor cells against my body), infections or (apparently very important) fungi. Despite all this, I was told that I might end up in the hospital quite regularly with (hopefully small) problems. I'll do whatever I can to avoid it!! The recovery of my energy level might take a bit longer.
Because I will be home for a very long time, I will have to try to get some structure in my life. It's something I've never had before, and maybe it's the right time to start now. I have enough to do. I can start practising cello again, need to get stronger again, because my muscles have weakened from the transplant, and there is of course my general physical condition. A tool that will help me with that is my Nintendo Wii! I can hear some of you think... It's a present from my old classmates from High School and really very very usefull for me!! Thank you guys!
I can go on about all this recovery stuff but I guess you get the point. My doctor is usually very serious and tries to be realistic, trying not to make me dissapointed if things don't go as I'd want them to go. Knowing this, I hope, trying my best to do whatever they say is best, I hope my recovery will take as short as possible. This way, I might start a new normal (professional) life at the beginning of the next scholar year. Wouldn't that be nice?
Since yesterday, everything is going surprisingly well! All the fever was gone, the itching was much better and (very important) the hiccups stopped. I started to eat a little bit again (I get most of my food from an infusion). This all means that the stem cells have started producing new blood cells! The doctor released me today from the strong quarantine, so today my (healthy) visitors can just enter my room without the masks and all the rest. The doctor was also talking about going home by the 31th of December!! But I don't dare to hope something like that! It was the assistant who said it, I wait for the supervisor to confirm.
I just went for a walk down the corridor here, and even though it cannot be colder there than 20°C, I felt very cold, I'll have to get used to temperature changing again. It's also maybe because for the first time, all my hair is gone!
I talked to the supervisor and he confirmed, they're planning my going home on Thursday! Two more days! I will be at home for New Year's Eve!
