Thursday 05/16/13  

DAY 8 of Chemo treatment.

Today is "chemo day" as Florian says.

After tonight he will have two more Thursdays with the same meds, the first phase of chemo lasts for 29 days.  Its the induction which kills all of his bad cells in his blood. After that he has to do another series of treatments for his condition. For now he is concentrating on Day 29 which will be June 6th.

He also had a spinal tab this morning and could not stand up for 3 hours. This did not stop him from eating a steak sub for lunch while he was laying down. He has been doing a lot of exercise to lift his head enough to be able to eat without getting it everywhere.
  
Some examples of his major preoccupations:

Last night at 11:30 pm he sent my mom the following text:

I'm tasting a steak sandwich in my mouth right now and I want to eat one so badly. That means I will have the steak sandwich for lunch and the meatball sub for dinner.

I can literally taste it in my mouth.

Followed by this message at midnight:

Tomorrow, can you buy sandwiches that I can put in the microwave and heat quickly? Like on your way to the hospital? Like cheesesteak, or meatball or whatever they have in the frozen section? That would literally make me so happy. I swear, this is driving me crazy....

Actually. New plan. Can you just bring a meatball sub from Wegman's in the morning? A 14 inch? So I can eat half for breakfast, eat the steak sub for lunch and then the other half of the meatball sub from Wegman's at night. Sorry if this sounds crazy but I would be so thankful if you could do that!

Then at 5am this morning:

So on the sub. Can you ask for swiss cheese? With mushrooms, banana peppers, tomatoes and lettuce?  Also. I'm awake because they had to take blood. I wasn't awake all night thinking about sandwiches, don't worry.

He compares those cravings to pregnant women, (as if he was as well). Obviously they told him to eat as much as he wants to and as long as his throat doesn't hurt too much. Obviously you don't have to tell him twice, he understood right away. His meds, mostly the steroids, are helping a lot with his appetite. Last night my mom bought the super meatball sub from Wegmans with almost everything on it, must have weighted 2kg, he was only able to finish 3/4.

Other than that, he knows all of his nurses by their first names, chats with most of them, asks the techs about xbox games and which to buy, who then go on to describe the game with the different steps to pass ( my mom has no idea what video games are like and has no clue what she is talking about in this realm. Mostly flo and I talked to the nurses about the games we were playing and why they heard "Fuck this shit" so much while we were playing, he just got and beat Blood Dragon) 

He finds everything very cool: he has an IV with 2 tubes, he loves to have 2 different types of meds injected at the same time, he feels important (what? The pain meds help I guess). He is now a specialist with the IV stick (that's actually what they call it, we asked the nurses. For now he is trying to come up with a good name to call it) and knows how to get rid of air bubbles for example, although some nurses would get mad at him if he took care of it without calling them. He thought having some fluid injected in his spine was very cool, and while the doctor was doing so he was asking him about what they were doing in more details. Tonight, he finally peed red because his chemo was red, goal achieved, he was told it could occur and he was finally able to do it. 

Overall we aren't bored.

Raphael left for Raleigh after spending ten (no it was only 9 mom :( ) days there. Flo appreciated it a lot and was glad to play computer/xbox games with his brother. The nurses thought they were twins, Florian lost a lot of weight (this surprised the shit out of us, no one had ever asked us if we were even brothers before). But no worries, he still weighs more than Raphael and isn't near our dad's weight. 

You should know however that he easily gets tired and is pretty weak, his throat is starting to hurt once again. The doctors and nurses are trying their best to avoid the negative sides of chemo, he isn't nauseous yet but he is getting meds for it along with pain relief meds. 

Tomorrow will be the second week at Strong (Rochester), along with the 1 week in Buffalo. We are starting to organize ourselves, we don't have a routine yet but we are getting used to it. Of course the fact that we are spending most of our time in Rochester doesn't help things at home when the heater broke down and was leaking gas. They are in the process of replacing the heater and air conditioner, at least it isn't too cold anymore to live with no heater.