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 :-)!

Last Friday, we went to visit a small castel called Château de Sourches. It is located near a city called Le Mans, which is famous for its 24 hours car race.

In this castel, there is the largest collection of peonies in France. The garden has been built inside the moat of the castel. Although all the peonies were not all in blossom because of the bad weather we have during this spring, it was really a beautiful place with hundreds of different flowers and colors. Here are a few peonies, the ones we liked the most….Enjoy!

Next week, it will be another story! Back to Saint Antoine on monday  for a check up. Then on tuesday a new round of Vidaza will start, but this time I will be prepared: I have my friend, the “Zophren pill” and “Movicol” too: everything is chemistry!

On Tuesday May 17th, we had an apointment with the doctor specialist of transplant. She explained with a lot of details the process.

The first very good news she gave us was that they had found a 100% matching person! Yes! The drawback is that the process will be delayedd by a few weeks, but it is not a big deal!

The first day of hospitalization, a catheter is fixed on the chest. It will be used for all the injections, avoiding to destroy the veins. Then the chemotherapy starts. It lasts around 5/6 days. It is made to “clean up” the bone marrow: to remove the faulty stem cells. At the end of the process, the harshest part, I will be in “medullar aplasia”: no white blood cells, no red blood cells, no platelets. Transfusions and antibiotics will be needed!

Then the hematopoietic stem cells of the donor will be injected. The process is similar to a blood transfusion. The stem cells are cleaver enough, so that they will find their way to the bone marrow! Usually, they start to work after around 2 weeks, and the first blood cells produced are white blood cells. Daily blood analysis are used to follow the process…

In average, it take 6/8 weeks before the doctors give the green light: go home and be careful!

Of course, there will be “side effects” such as losing hairs, vomiting, etc… Very often, the “new hairs” are growing back with different characteristics. I am dreaming of red, curly hairs! Why not?

Once at home, it will not be the end of it. At the beginning, I will visit the day hospital twice a week (for one month); then it will be once a week (for one month), then not so often….up to the finish line when I will be free again and go visit my family and friends without restriction!

A last information: as the hospitalization will be delayed by a few weeks, I will have the pleasure to have a second chemotherapy with Vidaza. It will start on May 24th….

The statue at the top of this page is Saint Antoine!

After my platelets shoot last Tuesday, I was ready for our trip to Normandy! On Wednesday, we left Bures for our first stop at “the château of Miromesnil”, a wonderful bed and breakfast in Tourville sur Arques. We visited the potager, which is a mixte of flowers and vegetables: wonderful! We spent a night there in a round room inside a tower, and the next day we visited the castel itself and a small chapel…

We headed then for “the beach” at Yport, a small village on the cost. On the way, we stoped to visit another beautiful garden “Le bois des Moutiers” with a large selection of rhododendrons. Although the weather was not great, we enjoyed the visit…

We also visited a small chapel “with a vue” but without vue this day because of the fog ;-)!  The chapel had stain glass windows made by Georges Braque, and yes a statue of Saint Antoine my good friend!

In Yport, we had a room on the beach! The first day, we did not see the frontier between the sea and the sky!!! The next day, Friday, we went to Etretat, a city famous for its cliffs. We did a walk on the top of the cliff, so we had various vues of this wonderful place…

At last, the sun came, so we spent some time “on the beach” to have a rest (not without a coat of course ;-)!).

On Saturday, we headed back home. It was a freezing day! We stopped by the “Abbaye Saint Georges” located near the Seine river. So cold and windy!

After eating “une crêpe” we went back home…End of the trip to Normandy!

On Tuesday May 17th, I have an apointment with the doctor in charge of the transplants at Saint Antoine: back to the real world!

My last blood analysis from last tuesday showed that I had to few platelets. So I got a phone call from the hospital on tuesday evening: I was expected on wednesday afternoon to have another platelets transfusion. Everything went smoothly. I am now OK for around a week! Next blood analysis on May 17th!

Today, we are going for a few days in Normandy. The weather does not seem to be too good ! Well, we will see the sea!

On Friday, May 6th we went to visit Gien, a small city located on the Loire river. There is a small castel there, but not very nice and, more important, a factory where the Gien Earthenware is made (http://www.gien.com/boutique/index.php/?___store=gb_english). I love this place! We bought a lot of gifts!

On the way back home, we visited a small castel called Château de la Bussière: pretty nice! There is a large vegetable garden too! As the weather was perfect, sunny and breezy, we had a long rest near by the pound! A relaxing day!

 

May 3rd, last injection of Vidaza… The nurse arrived with all the set up for a transfusion: surprise surprise! My platelets count was too low, so I add a platelets transfusion! A longer visit to the hospital! Of course, I also got my Vidaza shoot ;-)!

Before leaving, we met with a young doctor as it was the end of my first chemotherapy round. She told us that the nurse in charge of organizing the bone marrow transplants would contact us next week….