Methotrexate 2

A big thank you for your patience and of course for checking up on the blog as we update it. Many of you have told me that you haven't had news from Florian in a while, we are really sorry and we don't really have any excuses. We try to make sure the blog gets updated as soon as we have more information.

Anyway to start back to where we were (not much new), Florian went to NYC and got to see all his friends, obviously he was very happy. Overall not too much detail, but him travelling is a good sign.

He came back a bit tired and was happy to be back in a calm setting. He was supposed to have his chemo on Thursday October 10th, but he had a cold and was coughing a bit. They decided to delay the chemo until Monday and to give him antibiotics to make sure he would avoid any complications.

That Monday we went to Strong, without much enthusiasm. It's pretty hard to get to the hospital feeling well (everything is relative) and knowing that a few hours it would change for the worse. It's once again the same chemo that he has to take for 24 hours after having been declared "basic". Next they have to remove any residue and wait for his methotrexate levels to be back to normal.

The chemo's effects are fairly quick to start up: nausea and mucus in the mouth. Digestive problems are also quite frequent. As soon as Florian arrived they diagnosed him with a "hard clostridium" meaning an inflammation of the big intestine caused by bacteria. Apparently it's normal when there are lots of antibiotics, which he has taken often lately. This means that he has diarrhea  (sorry for the details) and cramps: not great on top of everything. At first I didn't understand all the names of the diseases and I had to ask the doctors to spell things out which was when I understood then meant "difficile". With the pronunciation it was impossible to make the link with the translated word in French (difficile = hard). Overall, not sure who gave that name to that bacteria or the reason for such a name but the nickname is "C diff" making it sound "fancy".

Because he only had a stuffy nose, he was coughing and had C diff, everyone entering his room had to wear a mask, gown, and gloves. This was to protect him and to not spread microbes to other patients. This meant it wasn't always easy to understand the people that would try to talk to us. At one point, with all the precautions taken, Florian asked them if he didn't have the plague! There was big signs on his doors warning people that would enter his room to be careful. I should have taken pictures.

They started his chemo on the first day, and then they needed 2 days to flush the product out. Florian thought he could leave by Friday, however on Wednesday they announced his level was 3.2. Florian had told me he could leave if his level was 1 and so he was confident that he would be fine by Friday. Wednesday and Thursday Jerome stayed with him at the hospital. He appreciated it a lot and it helped him bear though his stay. It was much harder to see him have to leave while he stayed.

Until then, he didn't have much of an appetite and wasn't in great shape. Thursday morning the doctors told him that he unfortunately could not leave until his level of methotrexate were under 0.5. He wasn't very happy to hear that knowing his level was at 2.2. His morale wasn't at the highest, he wasn't eating, speaking, overall it wasn't really the Florian we all know. His level stayed at 0.8 for 3 days. It got worse and worse day by day, he was pissed at everything which was understandable considering his state, especially since it was the first time in 6 month that he has finally been outspoken about his anger. It was hard to see him in such a state without being able to do much. even the nurses who know him well didn't feel very comfortable. They didn't want to come and give him analysis results anymore.

Monday morning, 8th day, he was still around 0.08. We asked his doctor to check what she could do since he couldn't keep on going like this. She understood right away and authorized him to go home: this was the only thing he absolutely wanted, though they weren't too quick to let him leave and get all the paperwork done. Jacques and Florian only got back that afternoon, but as soon as he got back he started eating again. The next morning they had to go back to get his blood checked. In less than 12 hours he had dropped to 0.04 while in the prior 4 days it hadn't budged.

Conclusion of the story, whether we like to admit it or not, even if it's not scientific this is proof that moral plays a huge role in health and helps with curing the disease.

Since then Florian has gained 6 kg in less than a week, obviously finishing his "hunger strike" and once again beat a new weight record. The following week didn't have too many issues, he was a bit tired and still had his sneezing and coughing but other than that everything is well.

Having understood Florian may need a bit of a rest, they proposed to leave an extra week between treatments (usually 2 weeks). His next chemo was supposed to be Monday 4/11. Once again we just learned that it was suspended to next Monday (11/11) because his white blood cells count was not high enough to administer a new round of chemo. He will then have a lumbar puncture with an injection of chemo and then methotrexate once again. We are hoping it goes better than last time.

Other than that this week went pretty well, he still has his usual sense of humor. Small example: his hair are growing again but they are darker. He explains that because he wears a hat on his heard (yes it's starting to get cold here) and so his hair don't see light anymore. "Of course you know full well. the redheads are chidlren of the sun, which is why my hair are no longer red.", he adds "to be honest I am pretty proud of that"