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!
To make things clear. I said the radiation would probably start yesterday, but it will only start next Tuesday. Thanks though, for supporting messages :)
And one more thing to people with common names... Sometimes I can't be sure who is reacting on my blog if I only have a first name like Jan or Tom or Ann or... I hope I'm not hurting you, I don't know what it's like to have such names :) But of course I'm very thankful for every message I get!
Instead of Thursday, my doctor let come today for a meeting. I had sent him an e-mail with my feelings about last week. He could tell me a lot more. At the place where the radiation was concentrated, the scan showed nothing. But lower, inside my chest, they still see a little tumor. They will try to remove this with even more radiation! This will take two weeks, probably starting on monday. But research shows that the radiation is not enough for my kind of refractive cancer. I would only be safe for a few months and when it would come back, they don't have any therapy left... So, after the radiation they start as soon as possible the transplantation. And here is the good news, They found a donor!!!! And a good one, matching 10 out of 10. So we're really getting to the point now. The bad thing is, it's a very very heavy treatment, the doctor said. I will be in the hospital for 4 to 5 weeks (in quarantaine) and the recovery takes 6 to 12 months... But he made clear that this is the only choice I have right now.
Today I had to go to the hospital to talk about the PET-CT of monday. They kept me waiting very long and when a doctor came, it was someone I'd never met before, and he hadn't seen my file before. He could only tell me that there was nothing to be seen at the place where the big lump was before, but there was a place where the scan showed something, but he thought it was not a lymphnode. He didn't have any answers to questions about "what now?" and about the stem cell transplantation. All this had to be discussed on a general meeting with the other professors. He was very impatient and gave me the feeling that I was a stupid child with a cold or something.
I really don't understand this. One moment they give you the impression that your case is very exceptional and urgent, and now it feels like they don't give a damn. And if they've got nothing to say, why do they let me come?
Next week on Thursday I have a new appointment. The one I should have had today, I guess.
I promised to keep you informed so here I am again. Without any news actually :) My blood was allright on Tuesday, but they didn't have a donor yet. The taking of my stem cells will happen only after the scan, so after the 5th of october. In the mean time I feel fine once more! :)
I'm sorry for the long silence but also for me it's a quiet period. I'm just waiting... The last time I visited the hospital, everything was allright, but they only checked my blood and general health, which is fine! The next scan will be the 5th of october and untill now, I don't have any news about a donor. I have no idea how long this is supposed to take, but it seems quite long! Meanwhile, the lump is small (not gone) and stays small. The radiotherapist told me it's possible that I will always feel a bit of rest of the tumor. Next Tuesday I have an appointment at the hospital again. I hope they can tell me something about a donor and about the taking of my own stem cells. I will keep you informed!
Yesterday I had a phone call with my doctor. They haven't found a donor yet, but we have some more time, he said. The effects of radiotherapy can last for two months, so in normal circumstances they don't start another therapy during this period. Which means, indeed, I will be waiting for another two months. Unless something would happen before.
More waiting... But in the mean time, I feel fine!
Sorry for the long silence but there was not so much to tell. Friday I had my last radiation. The lump is not gone yet but they say it probably will be in a few weeks. At least it's a lot smaller. Except for the pain in my throat and some irritation of the skin, I'm very relieved about this therapy. Compared to the last chemo I had, this is peanuts! :) So, now we have to wait for the lump to dissapear and for a donor to come around... I suppose they will also try to take my own stem cells again very soon.
Last weekend, me and my girlfriend went to the Belgian coast. Ok, it's not the same as two weeks in southern France, but we had a really good time! It was the only holiday for me this summer! (how pathetic!:))
As long as the lump is shrinking, I am fine. I'm only starting to get a bit nervous because the stem cell transplantation is getting near.
Things are going okay. The first days after the start of the radiation therapy, I had fever every afternoon, and the lump grew even bigger. This made me worry a lot, because I thought the disease was just going on and the radiation had no influence at all. The results of a blood-test last week were a little alarming as well, because CRP was very high (69), but I didn't have any infections (I know, this is only understandable for doctors, but I know some readers are). Anyway, I was getting quite depressed by all that, but then every day the fever started to get lower, and we can even say the lump has shrunk a bit. Now, I feel fine, except for some pain in my throat when I swallow, due to the radiation.
One thing is less positive. The blood of my brothers does not match with mine. They started looking for a donor. The chances of finding one are about 70%. So, I go on hoping!
Thursday I went to the radiotherapy departement. There they did a few tests and also a new scan. They gave me a schedule starting next Thursday, but in the evening the doctor called me to say they wanted to start the next day because they saw on the scan that the lump was growing very fast. So, on Friday I had my first "fraction" (that's what they call it) and today my second. I'll have a fraction five days a week. There's nothing painful about it, but they say my skin will get irritated and I might get difficulties to swallow, because it's near my throat. I get a little nauseous from time to time, but not as much as during the chemo. The lump is not getting smaller yet, but they said there might be some necrosis (dead cells) or oedema (zwelling door vocht), so it's difficult to see any result at this moment. I hope I will see some changement by the end of the week.
