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!
As you can see it's quite early for somebody who hasn't got anything to wake up for. That's because I get steroids. A few days after the transplant I had some nice days but from Thursday I started a new fever. If that wasn't enough I started having hiccups (de hik), and in here that's not funny as normal, I have it for hours and it keeps me from sleeping. I also have a lot of red skin marks and itching places, but the doctors say it's normal, and even good, as long I can bear it. The fever is gone now so that's one thing less. They've also found a good treatment for the hiccups, but it's just not good enough yet...
But the doctors say I'm quite on schedule, so that gives hope. At least I will be home within two weeks.
The transplant went well. In 25 minutes all the stem cells were delivered. The doctors told me I would react a bit because of the different blood type, I would shake a bit and have some fever... Well, that was an understatement! I haven't been that ill in my whole life! The following night my temperature was around 40° and I felt terrible. Worse than the rabbit serum. Yesterday, around noon time things got a little bit better. As I'm writing this at 5 in the morning, I can't sleep now, even though they've given me a sleeping pill.
Well, now I have to wait 10 to 14 days until the new stem cells start to work and one or two weeks after that I can go home. I start to look forward to that!
Thanks again for all your reactions!!! I wish I could reply on them personally, but for now, I don't find the energy...
Today is D-day. I find it a very good metaphor, thinking of June 6, 1944. (I admit I had to look that up :)) The allied invasion for my liberation. It's only ironic because the enemy in this case is my own bone marrow. H-hour is around 1600 hours.
As you can see, I feel alright today. (some might even think I'm crazy) Saturday and Sunday I felt a lot worse. I reacted very badly on the rabbit-serum. First I started to shake uncontrollably and then my temperature started rising very fast to 39° and more, the nurses checking my temperature and blood pressure every hour, not giving me much chance to sleep. The fever lasted until next morning, but they had told me the first day was always the worst. When they started again, the reaction came a bit later but my temperature went even higher than before to 40°. Luckily on Monday, the reaction was much better and yesterday my temperature was not higher than 37°. Today this treatment is over. In fact every treatment is over. This afternoon they give me the stem cells, just one or two baxters, and after that, they will only give things to avoid or treat the unavoidable side-effects. The transplant won't take long, not more than an hour, but that's just the start. The whole process will take months. The new stem cells have to settle into my bone marrow, or actually become my new bone marrow. That's why this is a kind of rebirth. I will even need a total revaccination like a baby.
Thank you all for the courage you have sent me and still send me. I use it on the heavy days.
Yesterday they placed another catheter. I had one already but it is not meant to bring stem cells into my blood, the new one is placed into my neck, very disturbing. I had only local anesthesia, and as I said long ago, I hate that. Until yesterday I didn't have real problems. I was tired, but that's alright. When I woke up this morning I felt very nauseous, the effect of the second chemo, had to throw up and now it's a bit better. The dizziness is getting better though, I don't need to take those pills anymore. I realize that my updates in the near future will be quite negative. I will try to tell you the things the way I feel them, without exaggerating, but also without making them look nicer.
Finally I have my privacy room! Although nurses are entering here about 50 times a day. I'm still feeling quite fine, a bit dizzy because of pills against epilepsy, which I might get from the next chemo. The room is not very big, and a bit dark because I have windows to a corridor which has windows to the outside world. So, the next month I will have to spend my time reading, watching the TV and listening to music, when I'm not too sick that is. Some of you guys might think that's not so bad, and until now they're right. But we'll see... They're here with my lunch, yummie! Eating is going better than I feared. Not that I like it, but I can keep it inside!
I'll try to explain to you what exactly is going to happen. Yesterday they have started chemotherapy. The first chemo is meant to weaken my immune system so I won't reject the donor cells. Thursday they'll start another chemo, which should destroy the cancer that hasn't been destroyed yet. Saturday they will give me something interesting: some kind of serum grown in rabbits, which (I think) should prevent me from getting any other diseases, along with many other pills and infusions. Another very interesting fact is that my blood type will change! My donor has a different blood type, and his blood will take over. I will have an impossible blood type, being a son of my parents... Funny!
The first chemo is quite bearable, as the doctor said before. The second, on Thursday, will make me a bit sick (nausea...), and the rabbit serum will be quite heavy (in bed all day, the doctor said). And next Wednesday is the big day! They can not really predict how I will feel after the transplant, that depends on the rejection. I will feel very tired and get fever very easily.
Untill now, I am in a normal room, I will move to an isolation room by Wednesday. I will explain some things in Dutch now, because the chance that one of my foreign friends will come over is quite small, I think.
Ik hoop dus tegen woensdag in isolatie te liggen. ("hoop" omdat ik nu mijn kamer deel met iemand die superhard snurkt!) Men vraagt hier om niet te veel bezoek te ontvangen en je te beperken tot een select groepje. Dat wil zeggen: familie en goeie vrienden. Als je wil komen, laat dan de dag ervoor iets weten, per sms liefst, dan is het zeker dat ik het op tijd lees. De afdeling is 467 (groene pijl, 6de verdieping). Bij een eerste bezoek moet je langs de verpleging, zodat die kunnen uitleggen wat de regels zijn. Als je uit de lift komt, vind je de verpleging meteen links aan de linkerkant. Je moet er bellen. Kinderen onder 7 jaar en mensen met een verkoudheid of erger blijven beter weg (sorry!). Wil je iets meebrengen, overleg het eerst met de verpleging, maar met je aanwezigheid ben ik al heel blij.
So, untill now I'm fine! The worst is yet to come!!
Today, this afternoon, they will start the treatment. If there are no problems, I will have internet there, and I will probably use it much more than I do now, so I will keep you informed more frequently (if I'm not too sick). I will also try to explain what's going to happen, because actually, besides terrifying, it's also very very interesting!
The danger of telling you all that I will do an audition is that you also want to know how it went. I played just okay this morning, but of course you need to play perfect to win. There were 35 candidates from all over Europe, most of them very very good. I think seven of them went to the second round. Somebody told me it takes about 7 auditions before you're accepted somewhere. This was only my second so I don't need to worry yet :) I don't want to make excuses, but I have to say, of all the candidates, I was most unlucky, for I had to play first. They started right away, so I had no 10 minutes to play before like the others... But to be honest, these 10 minutes could not have made me win. Better luck next time.
(For all musicians: I always got the advice that the orchestral excerpts are the most important. Well maybe, in the end, but I didn't play any, they only asked the first two pages of Schubert's Arpeggione.)
The transplant is planned on December 16. The treatment will start about 10 days before. So the 6th or 7th December I will go to the hospital. It's coming very near and I'm getting a bit nervous. A bit down as well, because 'till today I could work and look forward to this audition, but now it's just waiting for THE DAY...
It's been some time, but I don't have very much to say. I get daily radiation untill Tuesday. This time I don't have much to complain. Swallowing is still a bit difficult sometimes, but not like the first time in August. After the radiation they will do some tests on my lungs and my heart and another PET/CT scan. I wonder if these tests could still prevent them from doing the transplant... That transplant (I found out that "transplantation" is not correct) will probably start in the beginning of december. That's good news, because I wanted to do an audition for a cello chair in the orchestra of De Munt, in Brussels (probably the best orchestra in Belgium! some people might shoot me now...) on the 26th of November. The chance that I will get the chair is quite small of course, but if I do, I hope they can wait for me to be fit again!
