Skype Day

This is the crowd that I avoided yesterday:

Nachita told me there were musical performances everywhere, plus lots of sausages and of course, beer. It was very beautiful, but  It was very wise to stay home too.

Today we skyped everybody.  Pepa and aunt Yolanda called.
We skyped Carmel from Melbourne, Australia.  It is because of her that I'm here.  When I felt the disease was progressing, I panicked and despertately started looking for any kind of relief, treatment, whatever could ease what I was (and what I am) feeling. I remember telling my neurologist to please tell me if there was anything in the World that could help me, even if it was in Mongolia.  Those were the exact words.  In my despair by feeling that the disease was progressing (and after being critized by everyone that I spent too much time on the computer), one  day I run into Carmel's blog and the word hope came back to me.  
Jorge Barahona is the name of the most benevolent, humane and kind doctor.  He immediately said the transplant COULD help me and was not against it, as most doctors in the word do.  I won't tell you the many "hashgajot pratiot" (blessings) I was granted until we got here, but wonders are still around. Sometimes it's just a beautiful butterfly that alights on the balcony, the wonderful sight of these German castles or ... we would rather keep that to ourselves.
I'm anxious to begin the next stage of this journey.
Jag sukot sameaj.

Time for Myself

We woke up late and in the afternoon Nachita went to the Heidelberger Febst: "Besides a large crafts market, a huge flea market and regional specialties, bands provide entertainment on a number of city squares – from cabaret to modern dance, from jazz to folklore, from hip-hop to hard rock", but I had to avoid crowds, so I stayed home.  She wanted to stay with me but I told her I would be ok and that she couldn't miss it! We arranged everything so I wouldn't have to walk back and forth many times, and then she left. Don't forget that I've had Multiple Sclerosis for 15 years, and though I look very well :o)  in the pictures, I have many clinical manifestations which I won't list.

I watched the movie "Eat, Pray, Love" ("Come, reza, ama") with Julia Roberts which Nachita suggested. I don't know if it's beause I'm living through this enriching journey or what, but it made so much sense to me.

This is me yesterday.  I feel happy...

Ready

I forgot to tell you that Bassam was discharged from the hospital!!!!!! He did it!!!! We saw him and he smiled and said he wanted to go home and see his kids... We were so happy for him!!!! He arrived by the end of July and will fly only at the end of the next week after two more appointments  with some doctors... (BTW, he had to wait so long because he arrived during the summer holiday season, so there were many people on vacation).

Last night I turned on the TV and watched in astonishment Netanyahu's speech at the UN.  I was shocked! I have talked to many Iranians (mainly taxi drivers) that had to leave their country for the terrible political situation... One of them said "the entire World is beautiful... It's men who turn it into a bad place to live in".  How true...

Today I had the last blood test. The one from Wednesday already showed a drop in leukocytes (as expected) so I have to avoid crowds, eat only cooked food and keep our place clean. We went downtown for a while and came back early to do some house chores.  We lit the candles for Shabat (thank you Katia for such a delicate detail).   

Well, I'm ready, eager to start everything next week.  Bassam already crossed this bridge, and so will I.

Shabat shalom...

 This is somewhere in the hospital

 The typical Heidelberg chocolate kiss!!
http://www.studentenkuss.com/english/geschichte.html

 A place reserved for Forrest Gump :o)

A kindergarten outing... What a good idea!

Notification

We don't have internet service at the guesthouse.  It seems like they are switching from cable internet to wi-fi.   Right now we are in a cafeteria downstairs and we will be here for about an hour.

Aunt Yolanda left today.  It was a fantastic and intense week.

I've been injecting myself for four days and I'm already experiencing the expected bone pain (five days left).

That's for now. It's pouring rain.

A Special Day

I shouldn't be here (it's Yom Kippur), but I'd like to tell you something...

We went to the synagogue and it was fully crowded...  I talked to a lady in my best Yiddish (which I don't speak) and I understood everything!!!! (BTW, each time we take a taxi I start asking the driver where he comes from, about his family, his country, I tell them we come from Chile and as they don't know where that is, I start asking if they remember about the thirtythree miners that were trapped underground and how they escaped in a capsule.  Of course they don't even speak English and I'm not making fun of them, but I love to laugh (my family and friends know about my "very special" sense of humor).   Everyone that's been with us, knows about it: Nachita, Simone, Frank, Pepa, Wim and aunt Yolanda do... :o) Anyway, I was telling you about the synagogue... There we sat next to the women and when the Rabi started praying the Kol Nidre in the sweetest way I've ever heard... I started crying so much...  I prayed God to give me the necessary strength to do this, to help me, to stay close to me... and cried......... and remembered my grandpa being the Jazan and praying the Kol Nidre, thought a lot about my mom... and I felt different, better, able to live through the next stage of this enriching journey that WILL improve the quality of my life and my kids' and overcome whatever  stands in front of me.

I'm ready.  I can feel it...

Thanks for your comments, your fantastic support words, for your generosity in making this dream come true... I'm eternally thankful.

Shana tova vejatima tova

Schwentzingen

Today I had the first blood test and then we went to visit Bassam, Maryam and his sister Bassima.  It was wonderful to be with them... They gave us important tips for the transplant. Maryam is leaving on Wednesday so it'll be sad... She's been so positive, nice and supportive. Bassima encouraged me to focus on the future, my kids, myself... And Bassam is doing a little better after Day + 10.  

I was still dizzy from the chemo, but I made up my mind and decided there were just a few days left to know other places... It started to rain, so we took a cab and were in Schwentzingen in 10 minutes.
The day was beautiful there.  We've been told about the castle, but it exceeded our expectations by far... 

This is some place in the main street.  Doesn't it look like a model?

This is the Schwentzingen Castle built in the 18th Century... We were there for three hours!!! You can't imagine how beautiful it was.  Its gardens were evenly cut, it had a lake, many ponds, statues, ducks, fountains, a theater, a mosque!, flowers, lots of green and much more splendorous things!

This is the mosque.  It was so imposing!
They explained to us that it was built only because they liked the architecture, but it was not a holy place for muslim worship.

 There's the three of us :o)

Everything has been so beautiful...

Tomorrow is Yom Kippur.  Jatima Tova everybody...

Short Post

Today we stayed "home".  Aunt Yolanda cooked some healthy food and I felt better...

I started injecting myself.  I felt nervous, but after so many years of doing the same thing with different type of treatments for MS, and thinking about my beloved Clarita who tought me how to do it, then: 1, 2 and 3! and it was done :o)

Tomorrow they will take the first blood sample after the chemo.

If I feel good then we will go somewhere.

These are some pictures that I like...

Shavua tov

Have a nice week...

Spanish Paella

After spending almost the whole day in the bathroom and without eating nor drinking a single thing, aunt Yolanda made this wonderful paella which I couldn't resist, despite the nausea. It was a "now or never" thing.  I ate it as if it were the last supper.  And let me tell you: it was absolutely delicious!

The nausea didn't leave my body, but I had been feeling very hungry and it helped somehow.

Nachita and aunt Yolanda went to buy some things that may help me with nausea like:  jelly, chocolate pudding and ice pops (thanks George and Scott for the tips).  While being alone I recovered my inner strength that had weakened for the last day.  I felt so miserable yesterday and even started thinking I might not be able to overcome the next stage... but I think the chemo gave me an idea of what the next days will be, and I feel more confident now.   I can't say I feel normal, but I'm doing better. 

Thanks Carmel and Maryam for your wonderful support words.  I really feel that you are here with me.

Besos

Post Chemo

Today we only did some errands, because I have been feeling very nauseous.  

We have been chatting a lot.

It was a beautiful day.

Shabat shalom

Sleepless Night plus a Special Visit

Last night I had to go more than fifteen times to the bathroom so I couldn't sleep! OMG I'm tired... Today they explained it was because of the cyclophosphamide.

Yesterday Maryam and I skyped George.  He was as supportive and reassuring as always.  Then, Bassima (Bassam's sister), Maryam and Nachita came by.

Later, I tried to sleep.  I even asked for some medicine, but they only gave me valerian which did nothing to me.

I watched The Simpsons in German... How weird!!!!

Then I watched Toy Story 3 on YouTube (my son's favorite movie). 

And when I finally fell asleep,  at 7.15, Dr. Ho came by again... I couldn't take him a picture because I had to rush into the bathroom...

I'm now waiting for the next chemo and we'll see later, depending on how I feel, if I am discharged or not from the hospital.

During the transplant stage I won't have to be isolated in a bubble unless I contract an infection. I will also have a roommate.  The medical staff follows strict sterilization standards.  

I wanted to tell you that I met Samira, the Physiotherapist.  She's so cute and she speaks Hebrew! She's arab, but she said she loves Israel, that she is in Beer Sheva at least one month each year, and she called me "ajoti" (my sister)...  Anyway, I miss Raúl, my Physioterapist (¡Hola! ¿Cómo están Rebeca y su guatita?).

Well, I'll try to get some sleep now...
_______________________________
I slept half an hour until they came to measure my fever, pulse and blood pressure...
Then Dr. Schxxxxx something explained the next steps:
1. I have to start taking Neupogen injections on the 23rd.  They are very expensive, but Bassam will generously give me 4 shots that he didn't use, so I'll have to buy only one box.
2. I'll have blood tests on the 24th, 26th and 28th.  My blood count should have dropped because of the chemo.
3. On October 2nd I'll have a new blood test to check if the stem cells count is already enough for the Apheresis (the process to remove the stem cells).  
4. If so, I will have the Apheresis right away.
5. I'll be hospitalized again for the HSCT (hematopoietic stem cell transplant).

I asked the Dr. if he thought I would be able take to the airplane back to Chile on October 28th and he said probably... that in medicine it's difficult to foresee events.

Everything has turned out wonderful up to now, so I don't know why God would have another plan for me... If that's the case, then amen....
_______________________________
Aunt Yolanda, my father's cousin, came from Spain.  Nachita went to the central bus station to meet her and they went together to the hospital to pick me up.  Being with her after 6 years was really touching.  
When we got home, she shaved my hair using our neighbour's electric razor.  I was also moved and feeling already on the way towards the most difficult and final stage of this hopeful journey.

That's for today.  I'm exhausted....

At the Hospital

I couldn't sleep so well... I woke up many times.  Well today I got the venous line inserted and they took some more blood tests.

A Russian lady arrived so she'll be my roommate.  She had a Stroke.  She only speaks German and Russian....

I'm receiving a saline solution while waiting for the chemotherapy.  

The leading expert on the hematological department stopped by. Famous and reknowned Dr. Ho and his colleagues were here.  It was a pleasure to meet them.  Dr. Ho asked about my medical history and said I would be closely monitored.

12.57 started chemotherapy
The chemo took about an hour.  No side effects so far... 
The Russian lady already left so I'm alone!!! :o)  I enjoy listening to Alan Parson's music and being in the Internet.  Maryam stopped by in the morning and then Nachita came and brought me her good vibes and great sense of humor.  We watched my cousin Avi's videos and we laughed a lot.  
I'm feeling well and very optimistic. I've been eating everything.  Who said hospital food was bad? It's delicious!!!

This is my new inspirational video:
https://www.youtube.com/watch?v=HCg9NKlsILU&feature=player_embedded#! 

16.55 I feel well, but I'm tired.  Although I've asked many times for the medical schedule arranged for me and none has answered yet, if everything is like with Bassam, then it should be two days hospitalized receiving cyclophosphamide (chemo), then 5 days approx. getting Neupogen injections to make  stem cells mobilize to the blood, then the apheresis (stem cells withdraw), and then we'll start with the harsh chemo.  When I'm  neutropenic (no immunity), I'll have the stem cell reimplantation and we'll wait for the engraftment.

Hospital (Thannhauser / Ackermann Ward)

13.43-  We are in the hospital waiting to get in our room!!! 
16.13-  It's room 20 (we just got in - Bassam is just on the opposite side of the corridor)
17.11-  Heart and lung checkup plus some blood samples and two failed attempts to put a venous line
17.38- I'll sleep here and the venous line will be put tomorrow along cyclophosphamide (chemotherapy) for two days.  
This is my bed (that little screen on the top is the TV).

 That's when she tried to put the venous line.

 The doctor and me

 Nice view to the pond that has ducks and frogs.

They gave me something for anxiety... I'm finally here.  I think it's going to be for two days. Everything is set and follows a strict protocol.
Good night you all.  Enjoy celebrating Chile's Independence Day.  
Viva Chile!!!!

Shana Tova

We woke up really early and went to the Synagogue for the Rosh Hashana service (Jewish New Year).  We were there at ten and at 11.30 I started feeling kind of anxious because I wanted to arrange everything for today's hospitalization.  I wanted to listen to the sound of the shofar, but I didn't :o(  A lady approached us (Rab Pawelczyk's wife) and said if there was anything we needed, we could call her.  I said they could pray for me and she replied that they have been doing so... Then, we left the synagogue.

While on the appartment my "nudnik" spirit started to emerge... I called many people at the hospital and even sent Dr. Neben and Dr. Blank emails.  Dr. Blank replied and said that today at about nine Mr. Diedrichsen (the Patient Manager) would call to tell us if there were available beds for me or not... So, here we are, waiting for that call...

In the afternoon we invited our neighbours to come over: Jorge (Mexican), his wife Vel (Bulgarian) and their two kids: Mattheus and Elizabeth.  They came to Germany for a year because their son had cancer... We had a good time together. The girl didn't want to appear in the photo.

Bassam is already in Day + 4 and we are always sending him good vibes.  Hang in there!!!

Museum Day

We are still tired... call it jet lag, bad shape, you shouldn't bite off more than you can do, MS...  Who knows.  The thing is that yesterday we had to rest and just lazed around.  That's why there was no post.

However, today we went to two special museums.  The first one was "The Prinzhorn Collection". This museum gathers the art of patients from psychiatric hospitals in the beginning of the 20th century.  It is very interesting.  They were artists whose art had to be specially classified, because no determined style could be applied.  This is a good example:

Then we went to the Student Prison Museum.  It's kind of strange to say that, but from the 1770's  to the 1910's students were incarcerated if they were drunk, if they sang on the streets, if they offended some authority, if they fought... There was a time when students enjoyed being in jail or even felt that it was something they had to do before graduation.  There was a maximum stay of four months...  They painted the rooms and made jokes about the police, called their rooms "Solitude", "Palais Royale" and the bathroom was the "king throne" :o)

They should have a jail for naughty students now :o)

Anyway, it has been very good to be in touch with Maryam (Bassam's wife) and to know about his state.  He's doing as expected: lots of nausea, but already in Day + 2.  They say engraftment occurs around day 12 and from that moment, it's a steady improvement.

Shana tova for everybody...

Frankfurt

Frankfurt was only an hour away from Heidelberg.  We had a nice trip on a train and there we were. This is the train station.  It was like an airport full of people with suitcases, shops, restaurants, many train lanes and people with different colors :o)

Nachita pushed the wheelchair around Frankfurt.  We never took a bus nor a tram. We were given a map and we headed to the "Main Tower".  Up on the 56th floor, which was  in about 30 seconds, we enjoyed the beautiful view of Frankfurt from above. It was breathtaking! 

The building was at the financial area surrounded by the Deutsche Bank, UBS, ABN Amro and all the companies I had to be in touch with when I worked as the foreign transaction operator assistant of a pension fund company in Chile. 

We proceeded to the Haupwache, the main shopping street. It was very elegant and  expensive. 

We run into a Jewish museum and we immediately went in, but we couldn't take the tour because there were stairs and I couldn't use the wheelchair there.  As we were told, It was the museum of Jewish people that lived there in the 1700s.

But then we arrived to the Römer, the town hall.  We were completely stunned. The place was absolutely astonishing.  I've seen that Platz in the Internet... but there I sat and cried.  The past months have been filled with emotions, so this wonderful place allowed me to open the key of my soul and shed some tears.

How could someone not be moved... The magic music of a very handsome guy playing the violin and a flute made this place even more fantastic... Mom, I wished you had been there with me, because I know how much you would have enjoyed it.

Before getting back to Heidelberg, we went to the European "monument of capitalism" :o) This day will stay in our hearts forever.

Peaceful Thursday

Yesterday Maryam (Bassam's wife) came to visit.  She was really kind, warm and very sweet. She told us that today will be day zero for Bassam.  That means that his stem cells will be reinserted to his body because his immune system is neutropenic (no immunity at all).  It’s like the new birthday for people who get transplants.  I feel so happy for him!

Anyway, she explained what was the job of the career, the precautions we need to take, times in which you can be visited, and it was so nice talking to her.  I wish I could upload a photo, but… Sorry Maryam.  You look fabulous on it, but I don't :o)

In the afternoon we went downtown and had a nice time taking photos.  Later we had some tea at the Hard Rock Cafe…

In George's own words: "Except for the chemo after-effects, there's no reason you can't treat this (HSCT) adventure like a vacation. That's what my wife and I did. And except for the one week of feeling ill, that's exactly how I remember my HSCT. With very good memories. Life is what you make it. Make it great!"

It’s wonderful to be here, but I can’t wait to have my own transplant and make an end to MS.  Why did nobody tell me about it before…?

Stuttgart

Yesterday, Pepa and Wim took us to Stuttgart. The road was very beautiful and had many interesting spots.  We even went through "Springfield" and the nuclear plant. I didn't have the chance to see Homer Simpson.  He must have been at Moe's Tavern ;o)

Stuttgart is a big city that mixes the old with the modern architecture...  We went to see Pepa's mother's house. My great-grandmother also lived there somewhere.   We ate at a typical German restaurant and there was a group of old and very fat men who kept staring at us (the three ladies).  What a good taste! (theirs)

Then we went to a typical German cake shop!!! I love sweets!!!!! I felt in paradise, just like Scrat  with his acorn in Ice Age :o)

We had to say goodbye to them, because they had to go back to Belgium.  Thanks for your company, the good conversations, the delicious food and for filling our memories with lovely moments to remember...

Things are Getting Closer

We finally went to Dr. Bender's appointment.  He was very nice and we could laugh a bit as we were kind of nervous.  It turned out that he had been in Chile 20 years ago and had the chance to visit Pucón, Osorno, Frutillar, Puerto Varas and all those lovely places full of Germans in the south.  

Another doctor entered the room and they both explained about HSCT.  Doctor Bender told me I will be admitted to the hospital on the 18th (that's Chile's Independence Day!) They said we would be informed about each step we need to take, beforehand... 

I was so happy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :o)

They talked about their successful experience with this type of transplants and they said they've performed the same for about 200 people, which sounded very good to me.

This is going to be the protocol:

Then I had an ECG (electrocardiogram), they took six blood collection tubes and I had more urine tests...

We were at the same building as Bassam so we paid him a visit wearing face masks and thoroughly washing our hands with alcohol.  We left him a note since he was asleep.

When we got back to the apartment, Pepa and Wim (her husband) were waiting for us!!! It was so magic, because Pepa looks so much like my mother... They brought us  chocolates from Belgium and a beautiful headscurf so I can wear when I become bold because of the chemotherapy. We directly went with them to a beautiful restaurant.  It was so elegant! In fact, it was the most elegant restaurant I've ever been in my whole life!

It can't be appreciated in the photo, but the place was fabulous.  I ate seafood with pasta :o)  Then we went to a lovely cafeteria and I ate a chocolate marzipan cake.  Yummy!!!

They will take us tomorrow to Stuttgart.  They are very sweet people...

The First Appointment

We arrived to Dr. Natour's office on time, but the secretaries didn't speak English.  So  suddenly a nice young woman appeared and helped us to fill a form.  They kept us waiting a long time in an office and they said the Dr. was coming.  When he finally entered the office he immediately asked about the payment.  We were kind of shocked because, at least in Chile, that's the assistant's business... I had to ask him permission to use his computer to find the e-mail that I received from the University Hospital in which they said I shouldn't pay for the heart eco.  After that he was more relaxed and asked a little about me.  While performing the test, I told him about my visit, HSCT... and he asked why in Germany to which I replied what you already know: that in Chile the doctors didn't agree to perform it for MS, that for India my Dr. didn't have any references about the center nor the doctor, that in Israel they performed the non-myeloablative one instead of the fully ablative... He said that he agreed that Germany was the best place on Earth to have the transplant (that's what he said).  

He then told me he was an Arab born in Israel and we talked in Hebrew!!! He said I could contact him whenever I needed during my stay at the hospital.

By the way! The test was ok :o)
It was a very hot day.  Nachita cut my jeans into shorts so now I have a new pair of shorts!

When we arrived to the apartment tía Pepa called (my mom's cousin who lives in Belgium and came to HB with her husband).  We'll have new visitors tomorrow plus a very important appointment at 10.  Tomorrow I'll tell you about it.
I'm still thinking of Bassam and my two jewels: Nicky and Gabri.  Thanks mom for being with them now... I love you.

A Day in the Neckar

Simone and Frank invited us to go on a boat through the Neckar River.  What an ultimate luxury!  

We departed from Heidelberg and headed Neckarsteinach.  On the way, the boat had to rise twice to the river's level.  

There was a restaurant inside and we sat very comfortably while the view was wonderful and many castles appeared in front of us to our admiration.  

We went off in Neckarsteinach, which was about 1.30 hrs away from Heidelberg.  Frank pushed the wheelchair through the steep road.  There was also a synagogue from the 1800 though it was closed... We took some photos and then we went to a restaurant and ate pizza.  

It was so hot! There were 31°C and in our way back to HB we took another boat that was hotter, and not all the windows could be opened... I managed to breath some fresh air in the bathroom :o) 

Heidelberg and its surroundings are very beautiful, but I wish we finally start getting sorrounded by doctors as it's the purpose of this journey.  I haven't been feeling so well and the word Multiple Sclerosis can't be erased from my mind...