Chemo Calendar on Halt

Chemo day just like every Thursday except that it's now been 3 Thursday without chemo.

Two weeks ago, it was his white blood cells that were too low. Last week it was he pancreas having issues. Today it's his level of enzymes in his pancreas that are too high, so they decided not to do the chemo.

This means that the chemo calendar has been put on hold for now, we are stopping on day 29 even though today should be day 43.

They weighted Florian who is at a new record for him: he is at 80kg (173 lbs). Still more than his father though. He has lost 27kg (60 lbs) since the first day of his sickness. This morning he was sitting on a bench (without cushions) and according to him it is horrible to be skinny because you feel all your bones: it's all bonny. Before he had some padding on the his back which soften the bench and were his cushions but now he is all bony. Overall he doesn't like being skinny. Of course I am a bad judge given my cushions....but apparently he feels it's more comfortable to keep them. It has to be said I never thought of that argument. I don't think that weight watchers would be very happy to hear the slogan: "For more comfort stay chubby".

The advantage to not having chemo for 3 weeks is that he feels better. He is starting to eat again of course much smaller proportions than before. He isn't finishing everything on the plate but he was glad to go have a good brunch after learning there was no chemo.

This means he has this whole week to rest and recuperate.

His hair were starting to grow again slowly so he decided to shave them again. He would rather have a clean cut head.

We will see what will happen next week, at least we will have learned that it's not possible to plan everything ahead and that we have to take it day by day.

Calendrier Chimio a l'arret

Chemo day comme tous les jeudis sauf que cela fait 3 jeudis qu’ils reportent sa chimio.

Il y 2 semaines, c’était ses globules blancs qui étaient trop bas. La semaine dernière c’était sa pancréatite.  Aujourd’hui c’est à nouveau le niveau d’enzymes dans son pancréas qui sont trop élevés, et donc ils ont décidé de ne pas faire de chimio.

Cela veut dire que le calendrier « chimio » est à l’arrêt pour le moment, on est arrête au jour 29 alors qu'aujourd'hui l’on devrait être au jour 43.

Ils ont pesé Florian, il a atteint un nouveau record pour lui : il est à 80kg (173 pounds), toujours bien plus que Jacques. Il a perdu 27 kg (60 pounds)  depuis le début de sa maladie.

Ce matin, il s’asseyait sur un banc (sans coussin) et d’après lui c’est horrible d’être mince car il sent tous ses os: c'est tout "bonny".  Avant il avait des rembourrage au derrière et au dos qui amortissaient et jouaient le rôle de coussin, mais maintenant il est tout osseux.  Bref il n’aime pas être mince.  Bien sûr, je suis mauvais juge étant donne  mes rembourrages… mais visiblement il est plus confortable de les garder.  A vrai dire je n’avais jamais penser à cet argument.   Je ne pense pas que Weight Watcher serait content d’entendre le slogan : «pour plus de confort, rester enveloppe  » 

L’avantage de ne pas avoir eu de chimio depuis 3 semaines est qu’il se sent mieux.  Il recommence a manger, bien sûr il est loin des proportions qu’il mangeait avant.  Il ne termine plus ses assiettes mais il était content d’aller prendre un bon brunch après que l’on ait appris qu’il n’avait pas de chimio.

Il faut donc qu’il profite de cette semaine pour se reposer et récupérer.

Ses cheveux recommençaient à repousser lentement, il a décidé aujourd’hui de les raser de nouveau.  Il préfère sa tête bien nette.

Nous verrons ce qui se passera  la semaine prochaine.  Au moins on aura appris qu’il n’est pas possible de tout planifier a l’avance, et qu’il faut le prendre au jour le jour.

Hospital update

Florian came  home on Saturday 07/20. It was apparently his pancreas which was acting up, they are not 100% sure why as far as I know. It could have been one of the meds of the chemo, or something else. He had to stop eating for a few days while in the hospital because his pancreas was not processing the food he was eating. He is apparently doing better now though and is back at home eating properly (obviously not back to his old eating habits but still eating and feeling a bit better). Unfortunately this means his chemo session is delayed for even longer, last time it was delayed because his white blood cells count was too low. Overall he is doing better but he is still weak, and try to recover before the next chemo on Thursday if everything goes well. His blood count is back to normal. His stomach is still not doing too well but still better than last week.  Just an update from the last post and what my mom told me. Flo may call me up and tell me to edit something because it's wrong, he could probably get an honorary BA in pre med after he is done with his treatment.

Back to the 7th floor of Strong

To start, a recap of last week.
Last Thursday Florian was to begin 15 days of intensive chemo. He went to Rochester but they decided not to start chemo because his white blood cells count was too low.
They would rather wait a week so that he could rest and have his white blood cells count go back up. Given he only had his meds to avoid the side effects things were going pretty well (relatively speaking of course). After 10 minutes of standing up, he still had to sit lay down.

So overall on Saturday and Sunday he was starting to eat again almost back to his normal self. We thought everything would only get better until next Thursday, the day were he would have to begin his chemo cycle if his white blood cells were back up.

Monday he started to complain about very bad stomachaches, it wasn't the first time but it seemed different and worse this time and the pain killers didn't have much of an effect anymore. Today since it kept hurting we went to Strong after having explained his symptoms over the phone.

They had to do an MRI as usual, by the afternoon they told us it was his pancreas the exact cause not being known but we should know soon. He received a medication during his chemo which can cause inflammation of the pancreas, but it can also be stones in his gallbladder.

Meanwhile he is getting higher doses of morphine for the pain but it isn't over yet. The effect only lasts for about an hour during which he can rest but the pain comes back pretty quickly.

So here I am trying to understand what everything does, the pancreas, gallbladder,...What would we do without the internet?
The nurses are also giving me things for the injection rashes so that they do not hurt: Florian has to have injections everyday for at least the next 3 months, sometimes when I do it it burns quite a lot.

I am telling you now, I am ready to pass the nurse's exams after Florian has recovered.

Overall Florian is taking his old habits back and is talking with everybody (mostly when he is not in pain and has his morphine). The nurse who is taking care of him tells us he studied bio then specialized in nursing and has now finished a master in music at Eatsman (University well known for music apparently). This is not the first time that nurses tell us their life story and it's always different and interesting.

We are hoping that tomorrow we will know a bit more and that we will have a better idea of the time we will have to stay at Strong.

We will keep the blog updated as soon as we know more.

De retour au 7eme etage de Strong

Tout d'abord, mise a jour de la semaine derniere.
Jeudi dernier Florian devait recommencer 15 jours de chimio assez intensifs.  Il est venu ici a Rochester mais ils ont decide de ne pas commencer la chimio car ses globules blancs etaient trop bas.
Ils preferaient attendre une semaine pour qu'il recupere et que ses globules remontent.
Etant donne qu'il n'avait plus que ses medicaments pour eviter les effets secondaires, cela allait assez bien (tout est relative bien sur).  Apres 10 min debout, il avait besoin de s'etendre dans le fauteuil.
Bref samedi et dimanche il recommencait a manger plus ou moins normalement. Nous pensions que c'etait gagne jusqu'a jeudi, date a laquelle il devait recommencer son cycle de chimio si ses globules blancs remontaient.

Lundi il a commence a se plaindre d'importants maux de ventres.  Ce n'etait pas vraiment la premiere fois mais cela semblait different. Les anti-douleurs ne faisaient plus vraiment d'effets.  Aujourd'hui comme cela continuait, nous somme venus a Rochester après leur avoir explique les symptomes au telephone.

Il a du faire un MRI comme d'habitude.  En fin d'apres midi, ils nous ont explique qu'il s'agissait du pancreas. La cause exacte n'est pas encore connue, ils devraient confirmer demain. Il  a recu un medicament pendant sa chimio qui peut provoquer l'inflamation du pancreas. Cela peut aussi etre du a des calculs dans la vesicule biliaire.  Bien sur j'essaye de comprendre tout cela en anglais sachant que en francais je sais a peine ce qu'est la  vesicule biliaire.

Entretemps il prend de plus hautes doses de morphine en intraveineuse pour la douleur mais cela n'est pas gagne.  L'effet dure seulement 1 heure pendant laquelle il peut essayer de se reposer mais la douleur recommence assez vite.

Me voici donc en train de comprendre comment fonctionnent le pancreas, la vesicule biliaire, ,,, Que ferait-on sans internet.
Les infirmiers me donnent aussi les trucs pour les injections sous cutanees afin qu'elles ne fassent pas mal: Florian doit avoir une injection tous les jours pendant au moins les 3 prochains mois: parfois quand je le fais cela brule enormement.

Je vous le dis, je serai prete a passé les examens d'infirmiere a la fin de sa maladie.

Enfin Florian reprend ses bonnes habitudes et parlent avec tout le monde (seulement quand il vient de recevoir sa morphine).  L'infirmier qui s'occupe de lui nous a raconte que il a fait une license en Bio, puis a fait sa specialite en infirmier et maintenant il vient de terminer un master en musique a Eastman (universite assez reputee pour la musique). Ce n'est pas la premiere fois que ces infirmier(e)s nous racontent leur parcours et c'est toujours assez varie et interessant.

On espere que demain on en saura un peu plus et que l'on aura une meilleure idee du temps qu'il faudra rester ici

Nous vous tenons informes des que l'on en sait plus.

"Dark humor" Cancer Boy to the rescue

(I Raphael am writing this and when I write: I, I(myself raphael) am acting as my mom since I am translating her previous post.) So here it goes.

Everyone knows that Florian is taking his illness with a sense of humor.

Here are a few examples of his jokes:

We had just changed a shelf with glass and added lights. Florian was in front of it so I (first example of how this is my mom not me, Raphael) asked him proudly if he noticed the change to which he responded :
"Mom, I have cancer...I am not blind!"

Here is another: Amaury was proudly telling us for the 76th time that he was going to give blood, so Florian said "I'll go give blood too! I can tell them it's really easy because you can take it straight from my "mediport". It's quick and easy!"

All of us are also still calling them "retarded cells" instead of "leukemia cells" and laughing about it (This may seem a bit over the top, but if you can't take a joke: fuck you my brother has cancer)

I (once again my mom) was talking to Raphael regarding his lost suitcase (I (myself Raphael) have lost my suitcase for probably about 50% of my flights, so I didn't really care since it only had my clothes and I have dealt with it so many times), meanwhile Florian was coughing a bit. I (here is a narrative shift) was busy telling my mom about how my suitcase was in Phili and she was very interested in hearing how I had proudly managed to have US airways lose my carry on once more. Florian was starting to cough pretty heavily, and it only got worse but we kept on talking about how my suitcase would come in later in the day. Amaury who was on the computer next to us busy browsing the internet decided that the noise Florian was making coughing his lungs up was too loud and decided to point out to us that he was choking. We then realized something was wrong. "Are you ok?" my mom and I both asked at the same time. He, while still coughing and barely able to talk said, "water". At this point we realized "oh shit we are assholes" and got him a glass of water. He was then much better, finally able to breathe properly and talk. Once he got better Amaury was pointing out to us "how could you guys talk about his luggage while cancer boy is coughing his lungs up!" (granted we did talk about my luggage for a few minutes while he was coughing as if nothing was happening). After Florian was finally able to talk again "what the hell I am dying over here and you guys are talking about his suitcase!" Our next reaction was normal (to us), my mom and I started laughing uncontrollably about how we are terrible people and were literally talking about something I didn't care about while he was choking. We did feel bad and he is still alright so everything is fine.

Apparently, while in the hospital he also decides to pass everyone while saying "Priority for the cancer boy!"

More to come in the following episode.

"Humour noir" Cancer Boy Jokes

Tout le monde le sait, Florian prend sa maladie avec beaucoup d'humour.

Voici quelques exemples des blagues: 

Nous avions modifie une étagère avec lumieres et étagères en verre. Florian etait devant et je  luidemande si il avait note le changement.  Il me repond:
"Mom, I have cancer, I am not blind yet!"


Amaury nous rappelait pour la 20eme fois qu'il allait donner son sang, Florian lui demande:
"How about I go and propose my blood.  I can tell them it is really easy because you can take it from my "mediport", it is easier!"


Ils rigolent toujours a propos des "retarded cells" plutot que "leukemia cells".


Je parlais avec Raphael a propos de sa valise qui etait perdue, Florian qui etait a cote de nous etait en train de s'etouffer et de tousser comme un malheureux parce qu'il avait avaler de travers.  Apres 2 minutes, il commence a me dire qu'il est en train de mourrir et je ne faisais rien pour le sauver.  Mauvaise mere, on a tous eclate de rire.

Dans les couloirs de l'hopital, il passait devant tout le monde en disant: "Priorite Cancer Boy!"


Suite au prochain episode.

Day 19 of the second phase or Day 48 since day 1 of chemo

It looks like we are inventing a new calendar around his chemo schedule!

Tonight Florian is at the movie. He already went on Saturday . It was a huge step. He came back completely exhausted and  laid down in his bed immediately.

In general, he is still really tired, without energy and really weak. For example today he slept up to 5pm: reason why he was ready to go to the movie.

He is in a 2 weeks phase where he doesn’t have any chemo at home. Just once a week at Strong by IV.  No more chemo by injection or by mouth.  After those 2 weeks we will restart with the daily injection and medication.

The side effects are still there: the more obvious for Florian is the loss of appetite: he prefers vegetables than meat or sweets.  I have to propose him 5000 things in a day to find something he would consider to eat.  This means he is still losing weight and is really preoccupied by his “shaped belly” disappearing.

His blood count is still going down but his hair are growing back slowly.

He is still on track according to the protocol but in the meantime he needs blood transfusions again as his red cells count is really low.  This explains why he is so weak. It looks like that this coming Wednesday he will need again to have more blood.

Florian was really excited last Thursday when the nurse used for the first time his “Mediport” for his chemo.  He was at the same time a little reticent and trilled to do it and finally it was not really such a big deal: really easy, just a needle going through his skin in the port. 

He was having a chemo that can be bad for his heart. Last time he had a small reaction  and was not feeling really well. This time to avoid any risk of this side effect (that can be really bad) they gave him Benadryl (anti-histaminic) to avoid the potential allergy.  As soon as the nurse injected the medication in his “mediport” he started sleeping like a baby.  He continued to try to speak but couldn’t finish his sentence or his words.  It was like a slow motion.  When we asked him regularly to see if he was doing well with the chemo, he was saying that he was not sleeping.  After 4 hours, he started to wake up and did not remember telling us that he was well awake.  It is incredible the effect of those medication. We laughed a lot with the nurses…

Amaury and his girlfriend Kathy made a point today to give blood.  Nice !  It will compensate for us (old people) who are not allowed to do it because we lived in Europe for too long.

On this coming Wednesday and Friday we need to go back again at Strong for Spinal chemo and IV chemo.  We hope he will be able to stay like he is now: not too much headache. 

Relay for Life Pictures

More pictures of Relay for Life

Again Thank you to all who donated and participated.

Flo's Bros Team, T-shirts designed by Amaury

The girls (Louise, Marie-Laure et Nathalie) at the begining of the relay.

Candle bags on the bleachers that form the word HOPE in the stadium.