Some sun on Paris for this saturday June 18th 2016. Yesterday, Jaja visited me…She is my sunshine ;-)! She had a few pieces of wrapped chocolate to share with me, coming from Monique: thank you Monique! I cannot eat chocolate with nuts, just pure chocolate. I will try to save them for visitors!

Yesterday was my second day of chemotherapy: first Fludarabine, then Busulfan. To limit the possible side effects, there is always an anti-vomiting compound given together with the “good stuff”, plus some other things like calcium etc…The only “side-effect” is that I spend a lot of time in the bathroom “eliminating” the fluids I am ingesting: it is made to clean the kidneys from the bad chemicals…(oh yes, they also measure the volume of “pipi” eliminated). Once a day I have my weight measured too…I hope they are puting all those crucial informations in an Excel table!

Today it will be the same protocole regarding the chemotherapy.

On the first day at the hospital, I started to take some pills: Am I sick or what! I am taking Zelitrex (antiviral therapy), Lansaprazole (or prevacid)(to protect the stomac), Cholurso (to protect the liver).

From yesterday I had my blood sugar tested once a day: Jaja is jealous when she sees the results!!! But she fights back and shows me her red blood cells count!!!

This morning, the nurse changed the dressing around the catheter: everything looked OK!

Yesterday afternoon, the nurse came in the room and told me that he had glued a post on my door: “aplasie” (aplasia). It means that the polymorphonuclear neutrophils were around 100 whatever the units are (near zero!). So I am now at risq for “infections”… (it also explain why I am now Mister A for Mister Aplasia!!!!!

It came maybe earlier than expected, but for me it is not really a surprise as I had already a very limited number of those cells before!!!

Today the weather in Paris is somehow better: a little bite of blue sky, a little sun…as for the temperature, I cannot tell: they don’t allow me to go outside for a walk!!! But on a brighter side, I have now a very long tubing between me and the machine, so it is easier “to run around” the room: freedom, freedom!

Today was the first real day for hospitalisation. At the program we had: a catheter to be installed; the begining of chemotherapy; a few other analysis (not to be explained in writing).

At 6am sharp, I had my first visite of the day: blood analysis by a nurse. Before going further I should say that all the person working in the service are very kind and caring, and very professional too of course!

Before going to the surgery room,  I had to wash myself with “betadine” an antiseptic stuff. It took just a few minutes to have the catheter fixed. With this set up, it will be easier “to run around” the room freely!

Early in the afternoon, I had the visit of first one then two belly dancers, courtesy of the French Social Security! This institution is not very reach, so the dancers were not the youngest on the market ;-)! But they were very efficient to make me laugh!

This afternoon, it was the begining of the chemotherapy: two different compounds; one is over, the second one is on its way. Up to now, no side effects (an anti-vomitic compound is also running in the perfusion). I will have nurses visiting during the night to make blood analysis and change the chemicals runing in my veins…

On the side, I started to take pills: Zelitrex which is an anti-viral; Lansaprazole to protect the stomac; Cholurso for I don’t know what but it should be very important. Tomorrow will be another day of chemotherapy more or less similar to today…

Today wednesday June 15 is the begining of a new adventure: this afternoon I entered the hematology service at Saint Antoine. My room is room 426. It is a classical hospital room, nothing fansy (see photos below). I had requested a room with a mountains vue, but they did not have one available at this time:  ! So I have a view on the roofs of Paris, and if I look carefully I can even see trees! Yes!

In entering the hospital late in the afternoon, I expected to have a quiet evening: not so! I have already a drip installed for the night (a kind of hydration stuff (water?), plus I had 3 kinds of pills with my dinner….They are taking good care of me! I had also a blood pressure measurement as well as temperature, plus an electrocardiogram….

Oh yes, I have also a TV: I will be able to follow the football games, then the tour de France…I hope to be out when the Olympics will start in Rio in August!

Tomorrow will be the begining of the real thing: chemotherapy!!! Before I will have a catheter installed, to save my veins!

To be continued….

We used my last days as “a free man” to visit the Morvan regional park. It is located in the north part of Burgundy. This area has a lot of lakes, like the one on the photo, called lac des Settons. There are a lot of forests too, and one of the products sold around here are Christmas trees…

The weather was pretty bad, rainy and cold! But we were able to have a walk around a part of the lake…

We went also to Vézelay, which is known for its basilica. We met there my good friend Saint Antoine as well as Marie. Following a family tradition, we offered candles to both of them!

We also visited a castle, Bazoches, where Vauban lived. Nice place!

We also visited a wine cellar near Chablis: very good white wine!

Today, we started to prepare all the stuff needed for the hospital: clothes mainly. Everything has to be washed at high temperature, dried in a dryer, ironed (I did the ironing ;-)!). Everything has to be stored in closed bags…Jaja cleaned also my crocs! I will  bring also with me my computer, a hard drive, my kindle… Of course, those things will also be cleaned using some kind of alcoholic solution to kill all the germs. Everything is becoming “real”: no escape! Scarry scarry!

Next time, I guess I will be writing from “my clean room” at Saint Antoine: see you there!

Tic tac, tic tac.. the clock is carrying me closer and closer to june 15…

First, I will have a chemotherapy. A well known “side effect” is the loss of the hairs. To prepare for this “traumatic event”, I decided to have a preventive haircut :-)! How do you like it?

Last time I had such short hair was in 1977 during my army service!

Last friday, we went to visit the “Institut du Monde Arabe” in Paris.There is a special exhibit called “Gardens of Orient”: beautiful! From the top of the building, we had a view on Notre Dame and the Seine river (photo above) (http://www.imarabe.org/). The weather was pretty bad, rainy and cold. We ended up eating cakes in the small coffee shop of the Institute ;-)!

On the week-end, we had all (or almost all) our children visiting us! Yes! Jacqueline cooked her famous “pâtés” (vegetables, monkfish), a lemon chicken and her World famous apple pie!

On monday, I had my last blood analysis…I was not sure I might have to go back to the day hospital to have a platelets transfusion, but the results were good: no need for a transfusion!

Yesterday it was “gardening time”. The weather was good, sunny and warm. We have new rhododendrons (a red one and a purple one) as well as peonies blooming…photos!

If the weather stays OK, we will go for a few days “in vacation”: my last trip before entering the “space station” en route to the moon (or mars depending on the time I will stay in the hospital)…

Today we had a meeting with the doctor in charge of transplant. She gave us some extra informations, like the name of the drugs to be used during the “conditioning period” (translation: the period during which chemotherapy and immunotherapy will be used to clean up all my hematopoietic stem cells plus some other things like immune system). 3 “drugs” will be used : fludarabine, busulfan and rabbit antilymphocyte serum… The duration is 6 days. At the end, I will be in myelosuppression (aplasie médullaire in french)…I will be ready for the hematopoietic stem cells transplant given by the donor..

Before leaving, she told us to enjoy life during this waiting period!

Yesterday morning (May 30th), we had an appointment at the day hospital. I was supposed to have a blood analysis, a myelogramme, the first day of Vidaza and a meeting with the nurse in charge of transplant….

Of course, as usual, last minutes changes occured! It started with the blood analysis. I had two nurses near me, just in case: they all thing that I might faint anytime! They do make jokes about me! Of course I did well ;-)! Next we had the meeting with the nurse regarding the practical aspects of the hospitalisation: what can we bring in the room (computer, some food (special package no “home made food”), what kind of clothes (need to be “boiled” to remove germs; 60°C is OK). etc…). Before we looked at a DVD explaining again the different steps for a hemotopoietic stem cells transplant, with the “side effects”: very informative, but with Jaja we are now kind of experts in hematology so we did not learn much. But it was useful to have all the informations given in one single DVD! Oh I forgot: the first minute we met with the nurse, she said that I did not need to have the Vidaza treatment. Why? Because we have now a time for the hospitalisation: June 15th 2016! The last thing to do (well it is what I expected) was the bone marrow analysis: no problem! It does not really hurt. The feeling is just strange: like if something was pumped out of the body… The doctor asked me if I wanted to have a look to the glass slide on which they spread the marrow. She showed 2 small “things” and told me that they were pieces of my marrow. They analyse by optical microscopy the contents. When I left the room, they asked me if I was OK and could walk by myself back to the room: always the same “fainting guy” reputation!

The day ended up by an unexpected red blood cells transfusion: the results from the blood analysis done in the morning showed that I had too few red blood cells…

We have now the timing for the process: entering the hospital on June 15th afternoon; on June 16th a catheter will be put in place and the same day chemiotherapy will start. It will last for 6 days. It will not be the funniest part from what the nurse said…. Then on June 22th, it will be time to have the stem cells transplant: a simple transfusion. This day will be D zero (J zéro in french)….

Today, I have an appointment with the doctor who is in charge of the transplant. She will inform me of the results related to the various exams I did last monday. I don’t expect any surprising news….

Last week has been a quiet week:no chemotherapy, no blood transfusion!

I did some gardening (photos from the garden). We went to the “Rambouillet forest”, not fare from home for a walk on friday: a sunny day, very unusual this year in the Paris area!

Tomorrow, I will have a blood test, then a myelogramme, to finish with the Vidaza injection. This time, I will be prepared! I will take the miracle pill to prevent vomiting ! We will speak with the nurse in charge of the transplants too…

Monday May 23rd: it was “the day” for the check up before the transplant. We had to be at the day hospital by 8:30. We went by car under a big rain! Traffic jam all the way! I almost arrived late…

First exam: blood test. Easy! The nurse, who I know now was a vampire disguised as a nurse, withdrew tens of tubes of my precious blood (in fact it is more a kind of a salted water with a few cells swimming inside!). I was OK, until 5 mn later when I fainted… Second time during a visit in Saint Antoine: all the nurses in hematology know me as “the guy who is fainting” when he has to have a drip installed :-)! It took me some time before a full recovering…. Conclusion: I was late for all the other exams scheduled this day!

Next exam was a X ray of lungs and sinus: no problem! After was a test about lung capacity: I did above average! Yes! We had to run all around the hospital because all the exams were done in specialized department…. We know pretty well the geography of hospital now…

I had next to meet with an otorhinolaryngologist: I was late, the guy was famished, so he did the exam in 5 mn! Good for me!

Time to have a brack for lunch! We went back to the day hospital for some time, then I had a scanner of the main body plus the sinus (in fact the purpose of most of the exams is to detect ” hiden infections”). The last thing was an echography of the heart, which is working just fine: good news ;-)!

It was too late to meet with the nurse specialized in transplant as well as with the psychologist. It was time to go home. We had spent the all day in the hospital!

Before leaving, I got the news: I could not have the second run of Vidaza which was scheduled to start today, because I had too few white blood cells. It is postponed and will start next monday May 30th. The same day, I will have the myelogramme done too…

Conclusion: I am in good shape for an old guy! Too bad I have this MDS :-)!