D+5

Hello again, hello... D+4 was a very stressing day: cables in and out, lung examination... plus everything Nachita so sweetly posted...

Last night I thought I'd sleep, but on the contrary... I couldn't. I'm not afraid of vomits.  After vomiting so much, I can even predict them and get ready :o)  

Today in the morning they gave me a sublingual pill for nausea and it made me sleep.  Then the physiotherapist came and we made some exercises... 

Simone and Frank came to visit!!!!!!! I was soooo happy... They brought me a balloon flower who is right next to me, making this room especially beautiful... They also gave to me a special  gift, which I'll keep to myself :o)  It was sad saying goodbye to  them, but they will be in Chile in only two months!

Later, the Dr. performed an abdominal ecco.  And the he said: "good news! your body is functioning completely as expected".... I'm super glad it's that way...

Now I'll take another pill for nausea that will make me sleep, so... I'll leave you until tomorrow.

Happy Halloween everybody.. I really hope neither doctors nor nurses will put any special disguise, because many  around would die from a heart attack! :o)

Loves, 

K

D+4

Hola a todos!,

-Soy Ignacia, ya que ha sido un día un poco agotador para Karina, escribiré yo en español, por lo que pueden usar el traductor de la esquina superior derecha. (you can use the google translator right on the top)

Dictado por Karina:
Hoy fue un día muy largo, vino el medico y dijo que sus plaquetas estaban en el limite inferior y eso quería decir que hay alguna infección.
Hoy recibió una transfusión de plaquetas, luego fue trasladada para realizarle un examen de pulmón para descartar la neumonitis, la que fue descartada, además le quitaron la vía central que tenia insertada en el cuello, para evitar infecciones, y está fue remplazada por una vía intravenosa en su mano izquierda.

Pide que sigan mandando buenas vibras y energía. Recen mucho por ella, porque sabe que esto tiene que ser así, pero que pronto vendrán días muchísimo mejores.
Quiere que sepan que anda todo el día con una canción en la cabeza de Freddy Mercury y Monserrat Caballé que dice: "guide me back, take me to my home where I belong once more..." y sabe que todo va a estar muy bien.

Les manda un abrazo gigante. y dice que yo soy maravillosa.

Gracias.

-De mi parte les digo que todo está según lo previsto, este proceso es así, lento y difícil . Agotador para ambas... de un enorme crecimiento.
Estamos tranquilas de que esto es así. Ya vienen días de luz... y para poder brillar con más fuerza tenemos que pasar por esta oscuridad. Es tiempo de metamorfosis para ambas y más para Karina.

Ya verán en la maravillosa mariposa que se está convirtiendo.

Un abrazo de luz.

Ignacia.

D+3 (evening)

I'm sorry, but I was messed up, and I was describing everything from the day before.  But today was D+3.  Mucositis is better than expected, but nausea and vomiting are here and don't let up for a minute...

C'est la vie.

I'll post tomorrow evening again, only if I can.  If  I can't, then Nachita will.

Good night

D+3

Yesterday was a bad day.  I felt terrible, vomited many times and received two blood transfussions (each one with Erythrocytes, Trombocytes and Fresh Frozen Plasma). It is very common to receive transfussions at this moment of the transplantation.  And I feel very much assured by the people from the Blood Bank that everything's the best I could get.
I remembered, "give blood, you'll be giving life", and so it was...

Nachita read all your comments to me and I  really appreciated them (thanks).

It seems like all my MS symtoms are getting worst...

Another day is over...
Kisses,
K

D+2

Yesterday I felt terrible.  I didn't know how to lay comfortably in the bed, felt like vomiting many times, and didn't want Nachita to leave me (as visits are until 20hrs.)... but she had to leave... :o( I've become Nachita addicted as she's so spiritually high and she's also the best person in the world who could have been with me during my metamorphosis. I even vomited in her arm, but she said that was ok...

So, fever didn't allow me to  do anything... but after many IV Paracetamols, they managed to lower the temperature and I could even watch a movie! Everything went smooth until 3am... So, there's light at the end of the tunnel...

One day less...

Keep sending your good vibes and I hope I can hold any food inside today..

BTW: Stem cells smell like a hard tomato soup to me.

K

D+1

Yesterday I had the worst night ever.  I vomited, I had high fever, I didn't know  what to do.  They put me in antihemetics, anti fever... anti everything. But everything was as expected.  It was an eternal night, the one you wish to erase from you, but it never ends up...

Now we have to wait until the "engraftment" occurs; that means that your new immune system starts recognizing the stem cells as their own.  On that day I will feel better...

In the meantime, there's still a lot of Karinita to fight for.  I promise I won't give up.

Loves,

K

D 0 - Happy Birthday to me!!!!!!!!!!!

I am not only Gemini, but also Scorpion!!!! I reborned at 11:38am on October 26th, 2012 (for the new astral letter)!!! 

It's an undefinable sensation... On the first time I was born I wasn't shaved, now I am.  I was completely helpless and now I can talk, I recognize people, I guess I'm thinking :o) because this whole transplant doesn't just involve the body... it's a complete metamorphosis... It's an additional option to live.  I feel happy!!!!! From now on, I'll celebrate my two Birthdays!!! 
Thank you so much Jewish Community of Chile... Your blessings and good vibes had arrived (and also of all the people throughout the World, whenever I feel bad, your good vibes do arrive, so please don't stop sending them to me...

Thanks Ale Selman for the beautiful poster you made :o)

D-1

I didn't sleep well last night.  As if the rabitt was holding on to my disease and didn't allow me to get rid of him.... I experienced the expected fever (39.1C).  They took some more blood tests and put me in some antibiotics.

I was shivering all over, but Prof. Ho said, the Tansplantation Day will be tomorrow anyway.

I'm hungry, so that's a good sign...

I'll fight with all my strength to get rid of Multiple Sclerosis.  

If I can't write in the blog,then Nachita will do it for me.

Thanks for your constant prayers...

Unless there's anything new to write, I'll leave you here.

With all my heart,

K

D-2

We ended up with all the chemos by midnight.... and I thought I could go to sleep, but at one they brought in another lady from some other city, made a lot of noise and turned on all the lights.  Though she snored very much, I changed the switch today and started talking with her a bit, because she speaks some English (we are separated by a thin curtain). I wished her a speedy recovery and she did the same to me.

One of the ducks is outside just in his regular place!!!!! It makes me feel so happy :o)

Well, I'm waiting for a new chemo called Elphalan and later for a new and higher dose  of the ATG rabitt.  It's gonna be a beautiful day.

Yesterday was the "Reshet Evening" (of my sponsors)... They projected this photo with the words I recorded thanking them for everything.. (in Spanish) My vital signs are still  stable and the doctor said my kidneys were doing super good! (he made a "rock gesture" with his hand).

I had the last chemo!!!! And from now on, it'll be only the ATG.
We made some exercises with another physiotherapist and it was very nice.
My mood is stable and I'm stil making jokes..
I'll tell you later if there are any news.

In the meantime, have a nice day...

D-3

Yesterday was very exhausting.  We finished the chemos + the ATG at 12am.  I just wanted to sleep.  I had a better night sleep interrupted, of course, by many ins and outs of the bathroom. I have to keep a record of how many glasses of water do I drink.

Today is practically the same as yesterday: Citarabine and Etoposide twice a day plus the infusion of the ATG rabitt in a double dose.

Tamara, the physioterapist, was there again.and we made some exercises.

This is the beautiful view I have from the window, and those ducks are here calming me and saying that I'm never alone. 

Until now my vital signs are stable, so the doctors are happy for me.  

It couldn't be otherwise, because Nachita is also next to me cheering me up all the time.

Thanks for your comments... I really appreciate them...
And the last photo for today!!!

D-4

It has been a very strenous day.

I managed to sleep between my comings and goings to the bathroom.  I had Cytarabine and Etoposide again (which I'll also have later at night), and I started with Thymoglobulin which is the "famous rabbit ATG". This treatment needs more monitoring because it can cause: shivers, fever and allergic reactions.  So far it has made me sleep a lot, so that's very good.

Oh! I forgot to tell you that I was outside of the room with a mask and exercised with Tamara the physiotherapist.

I skyped Carmel, Scott and Grace from Australia and even sang a bit of "Nothing Compares to you" by Sinead O'Connors.

Good night for now.  I'll get some more sleep.

This is in honor of the rabbit who's going to bring more magic into my life...

D-5

I didn't have a good night sleep.  I have liquid retention and thanks to a portable bathroom that is next to the bed, I managed to go there about 20 times...  They gave me some diuretic and still encouraged me to drink more water. I suddenly woke up completely soaked just from sweat. They helped my with new sheets and I had to change my pijamas... My eyes were also very swollen.

At 8 they put me again the Cytarabine and one hour later they put the Etoposide.  To which I reacted again very good.  I don't have any nausea yet. 

I had breakfast: milk, corn flakes, bread and butter, and Nutella (that I love so much).

Then I finally took a shower and  I put Freddie Mercury's music.  They brought lunch, but I didn't feel like eating, so I recalled the Spanish saying: "Enfermo que come, no muere", which would be something like "a sick person who eats, does not die" :o) After a while, I made up my mind, sat in the chair and had a very nice vegetable soup, plus stewed chicken with green peas and potatoes and for dessert a sweet apple.  Let me tell you, the food was delicious!!!! As George wrote in his blog, it exceeded my expectations and it was much better than in any airplane I've ever been.

The doctor was just here and he said that all my blood exams were ok and my kidneys were working ok too.  He said it's the chemo who made me gain two kilos in liquids, but that's the way it's expected to be.

Nachita was here, we skyped Gabriel and his father. 

She took some dirty clothes and she'll bring new ones later.

This is R2D2.  He's always by myself...

I guess they'll put the Cytarabine again at 20hrs. an at 21hrs. the Etoposide.  So it'll be the same as yesterday.  I will only add a comment if there's anything I should tell you.

In the meantime... 

Chao!

D-6

At 8 they started with Cytarabine and an hour later they put me Etoposide.  Both are more chemos.  They will put both of them again at 20hrs (in fact second round of Cytarine is almost over).

After a difficult night with my neighbour snoring... which of course made me see the beautiful dawn, I talked to the doctor on duty and told him about the lady and that I couldn't sleep with her noise and her "smells" (forgive me that).  So suddenly they took her belongings out including herself, and that was it!!!!! Now I have a room for myself, I don't have to use headphones, and I could Skype out loud without bothering anybody :o) 

I feel fine.  My mood is very good.  I can stil make jokes like: "a blood test again? Do I still have blood?" "Wasn't it supposed to be blue?"  I'm doing exactly what the doctors and nurses tell me to. This is my opportunity to get better.  This is my chance to prove that this is not any other treatment, but the cure of MS.  

See you tomorrow...

D-7

The nurses are really kind and professional.  They are checking on me all the time. Prof. Ho (the big man) came to visit me like everyday.  Everybody knows each detail of my disease.  They also come immediately if I call them. I feel very confident here.  Every little detail is arranged.

Well, after being with a very sweet physiotherapist and making some simple exercises, I was visited by Mrs. Toenessen, the psychologist. She made a quick check of my situation and after that, plus some nice talk, she said that considering the circumstances, I was in a very good  emotional condition to undergo the transplant. I will see her again next week.

Carmustine is the chemo I had today.  I tolerated it well, but had an allergic reaction.  My eyes were red and also was my throat. Every other thing was expected and those irritations were side effects.  I had to take out my contact lenses, so I'll be wearing my glasses from now on.  
The old lady who is in the room started throwing up a lot, so I put some Alan Parson's music and I fell asleep...
This is super nurse Julia, the one whose hand I almost strangled yesterday :o)

There was also a nurse from Portugal and I recited the whole "o burrito vai numa corrida louca pela serra" (remember that my ISIT friends?).  Anyway, we laughed a lot :o)
I feel fine. I've been watching Chilean TV and laughing a lot with the doctors, nurses and Nachita who has been so supportive,  It's ike having a motivational and inspirational guru 24/7.  Since we can't light the candles for shabat here, because the fire alarm can be activated, she said she would make the candles' blessing "at home". She is wonderful and she looks pretty, doesn't she?

Shabat shalom...

From the Hospital!!!

Yesterday we learned that there was a 90% probability of being hospitalised today.  It was for the remaining 10% that we told nobody about it.  Today I received an e-mail telling me that I should be in the hospital at 12.  I'm in the Van Dusch ward room 15, Rab Friberg.  It's a smaller room than the one I was before, but they said it's  the middle care unit and that they have more nurses here per patient.

I can't tell you how happy I am!!! I'm finally here!!!
After very stressing 30 minutes, the doctor inserted the catheter in the neck while I held nurse Julia's hand tightly.  Later they took me to take an X-ray and checked if the catheter had been well inserted in the cava vein.  Luckily it was... phew!!!! We will start the treatment tomorrow.  They call this stage of the transplant the "Hochdosis" or "High Dose" when I will start getting the harsh chemo for seven days. Tomorrow will be Day-7, then Day-6... and so on. On Day 0 (when I'll have no immunity at all), the stem cells will be reinserted to my body.  Then we will have to wait until my body "recognizes" them as my own.  It will take many days and my immune system will be extremely low so it will be the most complicated part of the procedure, because there will be a high risk to contract infections. Today they took some more blood samples, made some general examinations plus an electrocardiogram.  They made me breath 15 minutes some saline solution with an inhalator mask and told me I had to do it 4 times a day.  They gave me a special mouthwash which I have to use 6 times a day, then they gave me some nose drops to use twice a day and a special chap stick for chemotherapy.  I told the nurse she was like Santa Claus with all the gifts! :o) 

The wait has been sooooooooo long and I'm eager to start whatever comes my way!!!
Tomorrow I'll take a photo with the neck catheter so you'll see me :o)
We are in the final stage and here we go!!!!!!!!!!!!!!!!!

Eisenach, Belgium and Back

We had a beautiful stay in Eisenach with Simone and Frank.  Eisenach is the birthplace of Johann Sebastian Bach and the place where Luther translated the Bible.  Besides being a beautiful city, we were pampered and surrounded a lot by good vibes.

Then we went to Belgium to Pepa and Wim's house.  They made us feel like princesses... They made their typical mussels plate which was delicious! This photo is from Antwerp :o)

After a magical week we finally came back and had the long waited appointment. Dr. Hillengass explained everything about the transplant and I had to sign a Consent Form.    The doctor said that stem cells had to go under many regulations before being reinserted even if they were my own.  He also said he prayed for his patients and that he will pray for me. I will be admitted to hospital next Friday so we will definitely have to postpone our tickets back home :o( Again, man proposes and God disposes...  I will be hospitalized for three weeks, then I will have some appointments as an outpatient and we will go back to Chile hopefully around November 16th... I will arrange my bagagge before getting hospitalized because I know I will be extremely weak after the transplant. 

Keeping my mood high is very complicated.  Dr. Hillengass told me there was a psychologist specialized in people undergoing stem cell transplants, so it'll be very good to talk to her.
I love this place...  Getting out of the terrace and watching the castle still amazes me...

A Pause in the Journey

I want to tell you that the transplant intends to stop the progression of the disease. It is unrealistic to think that I will recover from all the symptoms.  Stopping MS is urgent as it progresses as we speak. After recovering from the harsh chemo, which will be some months later, they say some symptoms can reverse depending on the damage done on the myelin sheath. I don't want to have any expectations about  it, because it will be very disappointing if they don't come true.  

This forced halt turns the agony of the long wait into a bittersweet part of the journey.  From one side I really enjoy being in new places, but from the other, I would love to be home with my kids... 

As you know, we will be visiting Eisenach and Antwerp in Belgium so I decided to put a pause to healingreen until next Friday. 
See you then...

Change of Plans

We were going to have the appointment with the doctor on October 16th, but after insisting a lot, we got the appointment for the 12th.  Dr. Hillengass will  explain to us the whole procedure and I guess the transplantation will take place during the week after.  I'm sorry, but we will have to postpone going back to Chile.  I guess we will only know the exact date on the 12th after asking the doctor all the details. I miss my kids so much... but as I mentioned before: "man proposes and God disposes"...

We found this in the 6th floor of the guesthouse we are staying at...

Yesterday it rained a lot, so we stayed home, then we went to the supermarket and we bought the train tickets because we will go to Eisenach to visit Simone and Frank this weekend...This is the view from the apartment "between" rains.

We are going to take Pepa and Wim's word and since we have free days next week, we will visit them in Belgium.

It would have been fantastic to take the October 28th plane... but it's not going to be like that :o( We are here and we are almost through... 

Awaiting...

Yesterday the German Unity Day was celebrated.  It reminds the anniversary of the German reunification that took place in 1990.  It was a public holiday.

I stayed home and watched the movie "The Dictator" (gracias Matheuss!).  I needed to laugh a lot and so I did :o) 

Today I called the hospital and asked to please do the transplantation as soon as possible.  They said they will call us back tomorrow.

We'll keep our fingers crossed.

I found this photo in the Internet.

Take care!

The Apheresis

We were told we had to be in the hospital between 8 and 9, but when we arrived at 8.45 they called me by my name: "Mrs. Grünwald, we are waiting for you!" and then they took me directly to the Apheresis room.  Dr. Neben had asked if my veins were ok and I had told him that my right arm ones were stenosed due to many years having different treatments... So he said they would put me a neck IV line, that 10% of people had to have it like that. Anyway, the nurse checked and rechecked them... They put me a heating pad over my arm and waited 20 minutes.  She then managed to insert IV lines in both arms!!!!!! I was so happy!!! 

After an hour the nurse approached and said everything indicated that the stem cell account wouldn't be enough and she asked Nachita to pick up two more neupogen injections from the hematological department, that she didn't know yet if there were going to be one or even two more apheresis... Tomorrow is a public holiday here, but she said they would go to the hospital anyway... She said that was common and it was possibly because my bone marrow was very damaged due to the many treatments I've taken.

Everytime she approached and explained about the next apheresis I told her: "that is IF there are not enough..."  

Nachita and I made up our mind and were kind of given up... Everything happens for a reason...  

We were there almost four hours listening to mantras and cheer up music, until they finally took the stem cells to the lab... 

After twenty minutes the doctor called me on someone's mobile phone and she said that against all odds, I had 2.9 million stem cells per kilo, and that amount was great!!! I couldn't speak........ I was absolutely shocked...... I gave Nachita the phone and bursted into tears. I held the nurse (Beatrix) tightly... She was so sweet..  Later Nachita told me how impressed they were at the lab, because they thought I wouldn't have enough SC..

We have to call the hospital next Thursday to learn about the next step.
It was an exhausting and magic day...

A Visitor

I injected myself for nine days in order to mobilize my stem cells into the bloodstream.  Tomorrow they'll take a new blood sample to check if I have enough stem cells. We'll have to wait for the results, which will be ready in a while. The apheresis (stem cell removal) will take place afterwards.  The procedure consists in removing the whole blood of the patient and separate the components of the blood (stem cells needed in this case) through a sort of "centrifugue" and then return the blood to the patient.  The stem cells will be reinserted to me when I'm neutropenic (zero defense in the body).  In the meantime, they will process and store them... I really don't know what will they do to them...

Anyway, look who came to visit us in the 8th floor.  We haven't seen any parrot around. But there he was...very noisy as if he wished to be noticed!!!!

How could I not feel blessed...? :o)