4th Chemo and Theater

Wednesday, October 5th

I see my best friend from middle school and first year of high school. We lived a lot of episodes of laughters and young teenager chores. Now she lives in Aix-en-Provence. Really close by! We jump on the opportunity to see each other and go shopping. I enjoy to the max knowing that tomorrow I have chemo.

Thursday, October 6th

Time to fight. Round 4.

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I have an appointment with a new doctor. I had 4 chemos and 4 doctors. One different each time. It’s a bit confusing sometimes!

She tells me “Alright. I see here that your white cells are really really low. You are at the edge of aplasia. And you are suppose to do a chemo, which will kill the cells you have left. I don’t understand you didn’t do the Granocyte shots ?

-Yes, I did ! During three days.

-Well, it looks like it’s not going to be enough. I sign off for the chemo this time because I see that your Monocytes are up. Which are basically the same kind of immune cells but are produced faster. So it gives me the indication that they are going up soon. And you will do four days of injections. Do you do them by yourself ?

-No, my dad or a nurse do them.

-Well.. There’s really just in France where easy injections like this are covered by the social security. Don’t you want to do them yourself and help reduce silly health expenses ?

-Huh.. Yeah, sure. If someone can teach me…”

Alright, this doc was a bit cold, not like the others. My dad didn’t like her much to be honest. For me, it’s ok. As long as I get treated, it’s fine!

After an eternity of waiting, it’s finally my turn! Chemo perfusion starts and I have this really nasty metal taste other patients were talking about that I didn’t felt the first two chemo rounds. Well now, I just can’t forget the taste and it makes me nauseous. So I took plenty of candy to fight it with sugar and sweets! Yummy

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At the end of the chemo, I am SO tired. I can barely walk. I feel super weak. I finally somehow succeed to get into the car, with my dad helping me.

Once inside, I start singing a bit over the songs of the radio. My dad, to make me happy, turn up the volume and realize that I actually felt asleep in the middle of a verse. He told me that he laughed a little bit.

Friday, October 7th

I finally get out of my post-chemo coma of the two first days. My friend, Barbara, is coming from Paris to spend the weekend with me. She arrives around midnight. There’s a play at the hospital tonight about cancer, and even though I’m so toasted, I really want to go check it out. I feel it’s gonna be a good surprise!
We arrive 10 min late at the play.

It talks about 3 friends, 3 women young and long-time friends. All having a very different personality. Well, one of them get diagnosed with cancer.
It’s just a beautiful script and really REAL. Not like a Hollywood superproduction. Like what you really go through with your entourage when you got diagnosed. Sarcastic humor, scares and reconsideration of what you do and who you are.
It was really touching and I recognized many moments where I went myself and laughed and cried about it ! It was just too hard to keep myself from feeling and living again those moments! I can tell it was the same for my dad too ! (Probably one of the script writer got diagnosed with cancer herself, which gave her inspiration and real experience to write this play, so it sounds fair)

The play is called Cellule de Crise.
And here a pic of me with the actresses!

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Scan, challenges and a book

Saturday, October 1st

I arrive in Marseille from Montélimar. I spend the weekend with my parents and rest a lot. A LOT.

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Monday, I feel down a bit. First, I got a cold. My parents are a bit concerned and I’m afraid if it gets worse, they will blame it on Paris while I paid attention. Not very careful, but a little bit.

Also, it’s pretty hard to be back at home in my “cancer bubble” after a week of independence and classes. Feeling my age.
I decide to go study from the library the next day so at least, I breath some fresh air.

Study for what ? Well, my 7 midterms which will be waiting for me the next time I go to Paris. Damn!

Normally, I’m suppose to go back to class on Monday, October 17th.
For two weeks. But I will have to miss the first of those two weeks because of a scan and another chemo. Miss 42 hours of class…
Feels a bit stressed already writing that down.

I’m not even sure what stresses me the most?

The scan or the exams ? Which scan ?
Well, THE ONE which determines if the chemo treatment is working or not…

It would take the doctor a bad scan and 5 minutes to announce me I’m not nearly close to be done. Starting from the beginning. Again. Let’s not hope for it …

At the library, I borrowed a very cool book.

“Who Am I and if so, how many ?” by Richard David Precht.

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Young German philosoph.
I do love philosophy but I have to admit that rare are the teachers that are able to capture our attention and stimulate our minds to get us into the complex world of philosophy. Most of the times, they keep studying the same old theories in a very scholar way …
But wait, this book is EXACTLY the opposite!

The Author is SO smart and talented! And he is able to re-use those old philosophical concepts and theories and put them into perspective with the technology and sciences from today. Amazing!
I love Nietzsche and his theory of the human as a smart animal! (Or maybe also because he was so bright in his sickness and disease).
Here, the author illustrates his theory by the anatomic discoveries of the evolution of the brain from the monkeys to the human, to raise some questions if yes or no we have limits of our consciousness, knowledge capacity and way of thinking.

Anyway, if you like thinking, learning and if you are curious, it’s a great read!

 

Shaved hair

This entry is part 19 of 21 in the series Oldest to latest posts

My hair has been falling down for days. But it started from a few to a dozen to hundreds.

I told my friends and parents a while ago that I will shave before it gets to this point to take the power of making a decisions. But it got out of control, so fast and I didn’t have time to prepare.

On Monday, my friends had left, and I start loosing very large amounts of hair and I just couldn’t take it anymore. I just wanted to shave. The only problem is I was scared because I didn’t have anything to wear on my head in case the result was terrible.

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My parents come home on Monday night and I’m in tears. I tell them that I wanted to shave before feeling like this. That right now, I have nothing left on my head, like 1 out of 7 hair. I feel it. I’m even scared to go shower because I know the rest would fall more. I have this scary thought of me getting out of the shower with a whole in my head…
Hopefully, it fell pretty equally from everywhere so I have no whole for now…

My parents call a hairdresser that works for chemo patients. They set the appointment at my place for the next morning. Tuesday.

Her wigs starts at 500 euros for fake hair up to 1200 euros for natural hair. Social security reimburse 125euros and the rest is up for the private insurance, and I’m not sure about them.

I try two wigs. But it feels pretty weird. So I tell her I will think about it. I’m more interested about heard scarfs and bandanas. I try different ones and end up taking four.

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Two of them

 

 

 

When my mum comes home sha says that except one they are all ugly and making me look like an old lady. I kind of agree but there wasn’t any cute options for my age so I choose by default. She wants to return some of them. Let’s see how it goes.

We go to a wig store, I try some on. They are a bit cheaper than the other ones. 310 euros. I take one. It’s not cheap but anyway it’s not worth it to drop a grant for something I might not wear much if it feels wrong.

I guess it’s because my hair are super thin and light and when i try wigs on, it’s heavy and voluminous. It feels like not mine.

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At night, we decide to shave now that I have options if I don’t like it.
I’m excited and I feel relieved. I won’t have to deal anymore with all those crazy falling hair everywhere that I can’t live my life normally anymore.
It can’t be worse that it is right now!

My mum cut and shave my hair. My dad takes videos. We laugh. A very particular but nice moment.

You can see already some areas where my hair is kinda missing!

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At the end, I’m pretty surprised! It’s not that bad I feel like.
It’s special for sure, but not ugly. My parents even say it looks good on me. Awwwwww.
I send the pic to my boyfriend and he says I look badass. Ha Ha.

I leave the wig and bandanas for now. I will see if it continues to fall a lot or if I can keep a bit of hair like this. Probably going to keep falling honestly. I’ve seen it when I went shower and sleep the following days but the hair are much shorter so it’s less annoying. For now, I assume the short, very short hair.   0.2inch to be exact.

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PS

My mum found a rabbit while walking around the neighborhood. Really cute. We kept him three days till we found the owners. He run away and almost got hit by a car but got saved thanks to my mum. He bring a lot of joy to take care of him during these days tho.

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Second round of chemo

This entry is part 17 of 21 in the series Oldest to latest posts

Wednesday, September 7th

I have an appointment for 11.30AM at the hospital. I will be doing my second round of chemotherapy.

The hospital is pretty far by public transit. Like one bus, two metro and 20min of walk. My parent calls the hospital and apparently, transport to and from chemo seances are covered by the social security. Sick.

My personal driver is waiting for me outside my house. I am going a bit earlier because I planned to meet with the social assistant. I want to try to finish my last year of classes despite all the additional cost of “being sick”. I meet with her to see if there are financial help i can apply to to help me realize my project. Let’s see!

I put on my super mask that gives me a total duck face. Apparently, the hospital is like the worst place for virus and infections according to my doctors. So I need to be careful when I go there.

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After the meeting with the social assistant, I go to the waiting room for chemo.  My dad joins me. A doctor calls us. This time it’s a woman.

She’s actually the first doctor of this hospital that my dad met when he came to get more info about the cancer treatment here. He ended up in tears and she really took the time to reassure him. Really comprehensive and caring!

She takes a look at my blood work. It’s pretty normal. Some stuffs are under the regular number. Like blood count (red cells and lymphocytes) but no too much. She examines my body and lymph nodes area with her hands to see if anything new came up. Nothing. Then, we talk about the side effects of the first chemo and how it went. I think I did pretty good and I didn’t get more prescriptions.

“You are good to go for the second chemo. I give the order to the pharmacy to start producing and it should be ready soon”

Back in the waiting room. I tell my dad to go walk somewhere and just leave our number in cas they call us while we are away. We go to the main building of this cancer center. They have a multi-confessional praying area. I think it’s pretty cool. There’s even a spot for the agnostics !

Then, we go to the information and media center. They have flyers for the Lymphoma day. It’s a conference during a whole day with doctors, caregivers, patients and family. On saturday, september 24th. I register with my family. It could be good to learn some more stuffs.

We go to the 4th floor. There’s a special room for teens and young adults with TV, computer, DVD, magazines, fridge and a seating area. This room was financed by FLO Lymphome Optimisme and I feel thankful for it! It’s dedicated to their son, Florian, who passed away from a lymphoma at 22. His parents created the association and didn’t stop helping the cancer and lymphoma community. They will be talking at the Lymphoma Day !

100-5524-2Finally, after 2 hours something of wait, it’s my turn for chemo.
While I’m doing it, I’m watching a movie “Miracles from heaven” with Jennifer Garner on the TV. My dad falls asleep a little bit.

I also got a super cool magazine, called Rose (pink in French). It’s for woman with cancer. 

It’s pretty well done, with tons of tips, new, medical advices, stories, fashion and beauty selection,…

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At the end, after almost 3 hours of perfusion, I feel I need to go to the bathroom. But like really bad. Or I’m gonna pee on myself. But I need someone to disconnect me from the port.
I try to move and find a position when the urge is less critical. And even, meditate. My dad tries to get a nurse to come help me but no one is in the corridor. They are in a short meeting. Damn it!

It’s coming. It’s coming. That’s it. I’m gonna pee.

Finally, a nurse come. Alleluia! I almost run to the toilets. In maintenance. Ok, let’s try the other down the hall. Being clean by the agents too. Are you kidding me ? Someone tells me to go anyway so I enter and ask the cleaning ladies.
Finally! I stay in the toilets for what I feel like 4 minutes.

I go home with my dad.

I’m super happy I received Gilles, my flamengo. He can befriend Molitor, the killer whale. (Well, no I’m not crazy but my parents refuse that we get an animal like a kitten. Because of chemo and all. So I got fake ones for the pool. I don’t care they are CUTE!)

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I go to bed. I will be sleeping a lot. Wednesday, Thursday, Friday.
Waiting for my friends to be here!