Don´t Worry, Be Happy...

Hey!

Not much has happened the last week other than Ive been able to go home. Sunday the blood tests showed that the immune system had started coming back so they put me off the antibiotics and let me go home and sleep. I just had to come back the next morning to take more blood tests. After that I was able to go home again and that is pretty much how it has been all week. But today I got some platelets and blood and I was let out of the hospital so I am not hospitalized anymore. But I am going back on monday to take a PET-CT scan and a bone marrow test and biopcy.

 

All the specialists from different departments had a meeting about me on monday to discuss further treatment. So monday my doctor told me what would happen. It was pretty much what he thought in the first place. But as he said it is very important to get a wider view on it in case they miss something or can find an even better way.

So, this is whats going to happen:

I am going to take the bone marrow tests on monday and when those answers are as we hope (only healthy cells), they want me to start a new chemo treatment as fast as possible. They are going to use some of the "ingredients" that were in the chemo treatment I just had, and then another one that is ment for the germ cell tumor. And I will probably have 1-3 of those treatments before a bone marrow transplantation. And each of those treaments will take 4 to 6 weeks because the immune system has to get up on its feet inbetween. But they cant say everything for sure yet. The road is built while we walk, as Yngvar (my doctor) says. I was pretty shocked when he told me that I shouldnt expect to be done until the fall. Optimistic me had hoped for a chemo and cancer free summer...

 

This is a lot of stuff to go through and it is scary and horrible and I am already exchausted. But we are optimists. Me, my family, the doctors and the nurses. The combination of germ cell tumor and mega cariocyttleukemia is described in an article once in Japan in 2008. He was cured. The combination of phyllodes tumor, mega cariocyttleukemia and germ cell tumor is never described before. I am tired of being so freaking rare. But they are going to use pretty much the same treatment on me as they did in Japan. So I am going to be cured too. And look at the bright side. If I didnt have the phyllodes tumor first, they would probably never find out that I had that third cancer.

 

Bibbi is in Denmark now so I am an alone child at the moment. But Sissel and Nora come saturday!! I am so excited to see them:) So I am going to enjoy this weekend before next week starts with lots of examinations to get overwith and maybe start another chemo treatment. Good thing Millie comes in the end of that week!

 

Maria.

Finally some good news! The bone marrow biopcy was empty. It didnt have any malign cells (cancer cells) in it. That was the best thing we could hope for so it is a great feeling. It shows that the chemo treatment has worked! When I get my immune system back they will take another bone marrow test and biopcy to see how it looks then. And i will have more chemo treatments after that, but I will tell you about that later.

Well, I just wanted to share these good news.

Maria:)

Now I am pretty tired of staying in the hospital day in and day out. I have been here for two and a half weeks and I will stay for at least one more, but probably even more than that. They are all still so nice here. But I have had a lot of different nurses, so it is difficult to get to know them very well when some of them when there are new ones every day.

 

I wrote that last thursday or something.

 

I am still hospitalized, 3 weeks today. But sunday I was able to go home for the first time in a looong time for some hours. It was so nice to see the dogs again and sit in the couch and watch my own tv and eat good food at home. Everything taste better at home. I was able to go home yesterday too, and I am doing the same today. But today will be for a longer time, since they started the antibiotics early. Marion, my french sister (who I lived with the year I was in New Mexico) came to visit me this weekend. It was so nice to see her again. We didnt do much exciting stuff because I was tired and needed a lot of sleep, but being together again was the most important thing. And we talked to our best friend, Jaymee from Las Cruces too on skype. We are planning this summer when we are going to be together again. Probably in Spain, but we will see what happens.

 

Then we got to know some new things about this leukemia last week. They found a connection between the phyllodes/sarcoma tumor in my breast and this leukemia. And they think both the cancer can have origin in a third type of cancer, germ cell tumor (germinal celle tumor). So now a lot of hematologists, pathologists and oncologists are involved in trying to find out the best way to treat me. If germ cell tumor is the case, my prognosis doesnt need to change. But this might open up for new treatment possibilities, and it is good that they might have the answer why I got two different cancers in under a year. They have never seen this before, but they have found one article about another case. But I will probably know more about all this later, what it really means, if it has happened before and what will happen next.

 

But when all this is said, it is very frustrating to be in a situation again where they dont know and dont really understand because they find it wierd and of course very rare. It takes a lot of energy to wait on test results and wait on the answers of what the specialists have discussed. I had to take two bone marrow tests on wednesday last week because they only got blood on the first one. Then the next day I had to take a bone marrow biopcy because they didnt get enough bone marrow on the last bone marrow test. So right now I am waiting for the results of that biopcy. It is going to show how well the chemo has worked, and maybe some other things. The other thing I am scared of is that if they decide that I have to start on a chemo treatment that is standard for the germ cell tumor, I might have to move back to the other hospital (Radiumhospitalet). And then of course not the same department as last time. I like it here. I like the room (as much you can like a room at a hospital) and I really like the nurses and doctors and I have gotten to know them. I dont want to go anywhere else.

 

Other than that it doesnt hurt in my mouth anymore and throat and I dont have a fever so I am in pretty good shape. It is also nice to watch the world championship in Oslo on tv so that takes some of my time. I havent written so much on my blog, but it just takes a lot of energy to sit down and write. But I will try to get better. My doctor from Radiumhospitalet called me the other day to ask me how everything was going. That was so nice of her. And it is so nice to feel that she really cares.

 

Have a good day, wherever you are:)

Maria.

 

 

 

 

I have had some really good days since monday. It was so nice to have Sissel, Joachim and Nora here and wednesday Jeppe, Louise, Olga and Frida arrived too. So wednesday night we had a siblings night again, which I love! We played Settlers again and I think Bibbi would appreciate if I wrote here that she won.

Just found some old pictures from Russ that were taken by a professional photographer at the Opera house in Oslo. Great memories.

 

I also went to the physiotherapist. I walked all the way over to the fitness room, walked up one floor using the stairs, biked for 5 minutes in the fitness room and walked back to my room. A great work out for me. I also got the new glasses I bought a couple of weeks ago. I love them! It was just a great day.

 

Frida came to visit yesterday. She is just the cutest 4 year old you can imagine and Im pretty sure I wasnt the only one thinking that yesterday at the department of blood diseases here at Rikshospitalet. Astrid (my really nice contact nurse), gave her some hospital stuff to play with. And the electrical bed that we could move up and down was pretty fun too. Bibbi has been sleeping here two nights in a row, so now it was Jeppe´s turn. We had a really nice evening and played Settlers. We went early to bed because I get kind of knocked out of that morphine medicine I take for the pain in my mouth.

So this morning I woke up and my throat and mouth were hurting even more. It was hurting really bad. To the point that I didnt want to talk. I have blisters and scratches in my mouth and my throat hurts a lot when I swallow. So I get lots of cetorax, which is a morphine product and that I get pretty dizzy of. Ice cream is also my new friend. (It has always been my good friend though) But this is all normal to get after this chemo. It is because of the dry mucosas (slimhinner). So it will heal itself when my immune system comes back, which will happen in about a week. But you never know. Maybe faster, maybe slower. So I will stay hospitalized for a while more.

 

Olga, Louise and Frida are coming here today so I am very excited about that!! The physiotherapist came today too, and we did some exercises for my legs and arms in my room. Im getting a lot of stuff  intravenously today. The cetorax pain killers, salt water because Im not able to drink enough, nutrition because I dont eat enough aaand of course platelets, since I nearly didnt have any.

 

Maria:)

 

 

 

I wrote this monday morning. So Ill update you later about whats happening this week. And I will try to update you more often.

 

Its a long time since I have written now.. I started the chemo treatment tuesday afternoon and it lasted for 5 days until sunday night.

 

Ive been too tired and nauseous to write here. But now I am feeling a lot better. And I actually have been feeling pretty good the last couple of days. I will try to summarize the week real short;

 

Tuesday night I felt really sick and had a high fever. Second night was better, but I still had the fever. But that is because of the chemo. Wednesday I had to take a gastroscopy because of my stomach aches that Ive had for a while for no particular reason. That was not very pleasent. So I didnt feel very good that day.

 

Thursday night they had to change the needles in the Vap. They dont have a lot of experience with Vap here, only CVK, (another thing to get the chemo trhough) so it took 2 nurses from here, 2 nurses from the kids department (where they have more experience with it), an anesthesia doctor and a lot of poking with the needles before we got them to stick the right way. We thought. Not long after some saltwater had gone trhough the tubes, it started hurting a lot and swel. One of the needles was definately put in the wrong way. So I got a veneflon on my hand instead.

 

The next day (friday) I did an ultra sound because og the pain in my stomach and that it was very swollen. But nothing was found other than the liver was a little bit enlarged and some fluid. Next day started out pretty good and I finally had lots of appetite. But today I couldnt eat anything else than a little breakfast at 9.00am because I was going to have the surgery to change the Vap to a CVK. The surgery didnt happen until about 7pm, so I was pretty grumpy and hungry by that time. The surgery went fine and I was in anasthesia the whole time. I had been craving a burger from Fridays all day, so Bibbi and dad went and got one for me after the surgery. I couldnt eat the burger, but I ate some of the fries. So tasty!!

 

Yesterday (sunday) was a good day. I ate more than the other days and was feeling better. Joachim, Sissel and Nora came from Denmark. So me Sissel and Bibbi spent some time together. Joachim made some awesome deer sandwiches for me and he is going to make something for me every day he is here:) Lucky me!

 

Today (monday) I am not connected to the rack, so that feels like freedom. And I am feeling pretty good. Now I just have to wait till my immune system goes down..

 

It sucks that I have to be here. But the nurses and doctors are really nice and mom or dad sleeps in the room with me every night, so that helps a lot too.

The view from my room.

Im not allowed to have flowers here. But we put up some pictures from home to make it nicer.

Maria.

 

I had a great weekend with the cousins! Just relaxed, played games and ate good food.

We went to Rikshospitalet today and talked with a doctor and nurse there and got some more information about everything. She told me they had to do another bone marrow test and that they had to change tha Vap to another thing to get the chemo trough because they arent used to using a Vap. But then after a while they told me they would try the Vap. So that was quite a relief that I didnt have to go through another surgery. After the doctor had checked my general health, she suddenly told me "now that you are laying here, we might as well take the bone marrow test." Once again I was so scared that it was going to hurt, but it didnt. So that was really good.

I will start my first chemo treatment tomorrow. It will last for 5 days. And probably 24/7. They told I will get a fever about a week after that and then they will start antibiotics. So this treatment is probably going to be harder on my body than the other ones because the chemo goes right on the bone marrow. I am obviously not too excited about this, but like I have a choice. I just want to get started and get it overwith.

Maria.

 

Now its decided (i think? You never know). It is Megakaryocytic leukemia. The doctor from the department of hematology at Rikshospitalet just called me and asked me to come for a meeting monday so they could tell me a little bit more about the treatment and so on. I dont know a lot about it. Just that is is an acute leukemia, it is very very rare and the chemo treatment will probably be harder on my body.

We talked to Dr. Kirsten today and asked if it could be the chemo that caused this. She said they have seen it before that chemo treatment can cause acute leukemia, but not this type (as I understood it). But that is because it is so rare. It could also be a gene that I might carry that makes the chances bigger for me to get cancer. Or it might just be very bad luck. I just think it is unbelievable that one person can get two different types of cancers in under one year that both are so extremly rare. And then of course I think its unfair its happening to just me. But who wouldnt think that.

So we said bye to Kirsten. I was almost kind of sad because I would rather be treated at that hospital where I know the nurses and doctors. Kirsten has been the best doctor you can imagine, she always took her time when she came to talk to us even though she probably had tons of other things to do and you could tell she really cares.

Maria:)

I had the greatest birthday! Thank you for all the presents I got in the mail!!

Thanks to my parents I now have a new addiction.. I got an Ipad for my birthday so Im playing games on that all the time. I downloaded settlers, so there goes my whole day.

Blood tests where pretty good yesterday. Platelets at 37 and white at thirteen i think. The white bloodcells are high because of the neulasta shot I get to stimulate them.

But.. There is always a but. Dr. Bruland called today and told me that they have found out that this probably doenst have anything to do with meta-stasis. And it might be leukemia after all. If it is leukemia it is a type that is called Megakaryocytic leukemia. It is a type of leukemia that affects the platelets. And I probably got it from the chemo and it is very rare and even more rare to get it in that way. How unlucky are you allowed to be.. I thought I had used my quota.They dont know though if this is worse or better than meta-stasis though.

But as I sad, it might be, they dont know it for sure yet. They will know it before next week. And if it is this leukemia, I will not have the next chemo treatment. I will in that case start another chemo treatment at the other hospital where all the leukemia patients are treated.

Maria.

I havent written a lot this week. Not much has happened. Just had a lot of nosebleed and watched a lot of desperate housewives. Friday morning we went to take blood tests. I managed to not bleed anything from the nose before and when I was taking the tests, but when I came up to C2 (the unit Im hospitalized in) I started bleeding a lot. It was sooo grose and almost kind of scary. It wouldnt stop so they ordered platelets (blodplater) from the other hospital. I was pretty tired and pale too after loosing blood the last couple of days, so I got blood too. After two bags of blood and two bags of platelets and a talk with Dr. Kirsten I was allowed to go home. So Im just hoping Ill get through this weekend without any nosebleeding!!

Kirsten was pretty happy when she came in. The blod tests had good results, except from the platelets at 14 and blood percent at 8. But thats all things you can do something with. The white bloodcells had risen to 4,5!! And the LD (i think) Its some enzyme in the liver that shows signs of illness if it is very high. It was very high before, but now it was halved! And some other liver values where good too. This might be a sign that the chemo is working. So we were all very happy yesterday!

Sissel, Nora and Jeppe came later that day. We were going to have a siblings weekend while mom dad and the dogs went to Hafjell. So we ordered sushi in from the bessst sushi place nearby (TinTin på Lysaker) and played Settlers that I got from Jeppe in birthday present. That was such a fun game! And guess who won? yes, of course it was me.

Never seen take-away sushi delivered in such a beautiful way:)

Tongiht is going to be another sushi and settlers night. But tonight we have our personal sushi chef, Sissel to make it. And we will do our best to help. And tomorrow ill be 20. Tomorrow is also the day me and Maren were supposed to leave for our big trip...

Maria