Ski, hair loss and end of treatment

Beginning December, I went on a ski trip even though I wasn’t done with radiotherapy.
I met other young adults and teens facing cancer. I learned a lot from them but mainly, I just learned that we are just regular peyoung people and that despite everything we just like having fun and being normal.Beginning December, I went on a ski trip even though I wasn’t done with radiotherapy.
I met other young adults and teens facing cancer. I learned a lot from them but mainly, I just learned that we are just regular young people and that despite everything, we just like having fun and being normal. I think the team that took us there was surprised they could have so much fun with “sick” people.

Of course, I was too weak to ski properly but still went for a bit just so I can say I went skying while having cancer treatments! And the view was amazing! I just love mountains! We ate raclette and did apero with beer, wine and shots (no kidding!)

It was an awesome experience and I’m thankful for Cheer Up association to have take us there together.
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Surprisingly, I lost my eyebrows and eyelashes super late! Like 1 month after being done with chemo. I really had no much left anymore so it was kind of hard to see myself like this but it actually start growing up pretty fast after that, so that was juste a 2-3 weeks issue!
I learned how to fake them anyway!

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I had some bad episodes of weakness and fatigue as well as very low blood pressure.
Sometimes, it got me very worry! Especially when I was alone in Paris so I guess I started freaking out when it happen and that induced some panick attacks where I couldn’t breathe anymore!

That was honestly quite harsh to move in a new apartment in Paris alone. My parents weren’t down for it but I really wanted to try to get back to normal young adult life so I did it anyway. I think that now I manage those fears better.

Also, for new years eve, it was quite weird for me. I was exactly at the same place I was 1 year ago and with the same people, and this brought back intense emotions. I felt like a true survivor and very thankful and blessed to be here tonight. So when people came to me to wish me lots of great things I couldn’t retain my tears. But it wasn’t tears of sadness.

Since I didn’t want to people to feel awkward about me crying around, I tried to escape and then I was really touched that the friend that came and took me in her arms was the one that life and cancer hit the hardest by taking her child away…
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Thank you for being so amazing and supportive when you went and you still go through hell and I want to dedicate this post to little Alexander that I did not have the honor to get to know. I think about him very often when I see his pics around the house.
Just reminds me how lucky I am and how important my voice and my role to play as a survivor is important.

Finally, hair is growing great and I just turned 25 years old, celebrating with friends. It was amazing to see them all again, certain people after a long while.

Radiotherapy ended after 15 round on December 15th, and I just had my PET scan on January 19th.

The results came back amazing. Complete official remission and treatments are final and done. I’m free!

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Next appointment for follow-up is in 4 months! And I got my cath removal surgery approved for March 7th! Meaning that I won’t have this foreign object under my skin and in my vein anymore after that date! So exciting as it’s sensitive and since it keeps reminding me that I was sick.

I’ll keep the blog but probably won’t post too often! However, I will probably keep you in touch with my hair growth and the cath removal and everything that is talking to me, like the associations I have joined and for which I’ll take part into some actions about cancer and other things that I feel concerned about!

Thanks for reading me and being so supportive friends, you are truly amazing! Wish you the best year to come! Good luck <3

A pretty boring week

Monday, October 9th to Sunday, October 16th

After a nice weekend visiting around with my friend Barbara, it’s back to the house.
And this time for good. Or I mean for a full week.

I’m in aplasia. Meaning my immune system doesn’t work anymore as I got no more white cells in my body (or very little). All dead by the chemo poison.

Outside, it’s rainy and windy. Yes, even here in the South of France where it is normally always warm and shiny. And like EVERYBODY is sick. Of course, thank you FLU season. Anyway, it’s not like I was going to go out if not. My parents just strictly forbidden me to go out of the house this week. At least, it’s clear!

Honestly, I don’t even know what I really did this week. A mix of sleeping, TV, depression, stare at the wall, listen to music, try to study for my midterms without really trying too much and talk to friends online to maintain a virtual social life.

It was not an easy week. Lots of wondering and doubts. More I think, and less I know what I want. In life, for work, in everything. In my head, it’s pretty foggy. There is this shadow of constant uncertainty. When I study, it’s the only moment where my brain is thinking toward a unique direction, and that makes me feel better.

But I can’t really get motivated to study, because I feel like I’m never gonna succeed this year. I just came back from an appointment with the radiotherapy doctor to plan the 3 weeks of radiotherapy. I placed them between the end of my classes of the Fall semester (end of November) and my final week (Mid-End December). That makes me miss two days of classes where I have exams planned. So it sucks. And anyway, with the last blood work, I fear that next chemo is going to be postpone of a few days so I get out of aplasia. The problem is that this will make my calendar management go all wrong and miss both my midterms AND my finals. So why would I even bother study if I’m not sure I can make it to the exams ?

Normally, I’m super positive but this week, I’m down to the socks. Well at least they are cosy, but I’m not very proud of feeling like this. I even start wondering if I shouldn’t get to talk to the psy again. Talk about stuff. About my future. About what I’m expected to do when I’m cured.
My career was pretty straight forward before that. I knew where I wanted to go. Now, I could see myself quit everything and go to Africa, in flip flops, reading some French literature book of JP Sartre, trying to help build schools and infrastructures. But is it really a goal in life ? Yes ? No ? I don’t know.

So yes, I guess it’s a new opus of anger. Because I lost all my eye marks. I feel like I have 7 years old all over again. Not being able to decide or know what to do without someone telling me. I need to re-learn all the process. At 24, when everybody thinks you’re finally turning into a responsible and promising adult ready to take on his life and work duties.

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I don’t know how to integrate this society. Or rather to reintegrate it. Because I was pretty well off. Before this happened. I talk about it with a friend that goes through the same hardship. I tell her that for me, people say “Be strong! You’ll get even stronger and better after beating this! What doesn’t kill us make us stronger!” 

But I don’t really think it’s 100% true. I’d say it makes us stronger as it makes us weaker.

Because Yes, of course we live every minute doing the best of what we can to have no regret and enjoy. Everything feels SO GOOD. You wonder if you even ever really lived before. We are more prepared to face adversity and we accept our destiny. That we have no control over the flow of our life and life of others. But that it will be OK. Somehow. You just have to trust it.

The problem is that vision of life is incompatible with the society and people working full-time jobs, trying to earn a living. They are not trying to make the most of their time alive, all the time. No, they are trying to raise their kids, and get money to buy whatever they need or want.

At these people that you love and see getting tired at working hours and hours, you want to yell
Stop it! Go do what you really want! Imagine is that day is your last day! Is that really the way you want to spend it ? Would you have no regrets at all ?”

And this injustice of people that don’t allow themselves to fully live their life, I find it with people that AREN’T allowed to live their life. Because of war, of sickness, of poverty, of so many bad things really. Even entire animal and vegetal species are disappearing everyday because of the hyper colonisation of the humans.

That’s the kind of things I’m thinking about when I stare at the wall. All those things I have no idea where to start to help, improve or stop. And that make me feel drained. The how and the why. I lost my foundations. I’m in free fall. I just hope I didn’t lost my mind!
Other people tell me “I hope one day, this will look like an old bad dream. A far far souvenir.”

So, if going through this makes you stronger and better, why would other people wish that you forget about it ? Maybe it’s that the hardest part. Stay as you were ! Not change! So, should I forget all about it ?

 

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!

 

Week in Paris

Sunday, September 25th

I arrive pretty late at the train station in Paris. Paola come get me and we go eat at a restaurant around. Then I go to Mika’s apartment where I stay.
Tomorrow, I have class at 8AM. Like the all the following days (except wednesday).

Monday, I wake up and head to class for 8AM-7PM non stop. There’s even a worse day than that! Thursday, 8AM- 8.30PM! Wow

The challenging part is not only to make it as a long day of class but also to run during lunch break to get my Granocyte injection at a nurse office, next to the school.

After class on Monday, I’m very tired. But I’m pretty proud to have gotten through the day.

Tuesday, I have to start the Granocyte shot series and I’m afraid of feeling painful during class. Finally, it’s hurting but it would be hurting at my house too so I try to ignore the pain and listen to the teacher. I have a bad moment of intense fatigue but it gets better few hours after.

I go home after class to rest and then decide to join some friends at a bar at 10PM to see a band play. The band is really great and the bar atmosphere is cool!

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I last like an hour and half and then go home to sleep at midnight.

Wednesday, I have class a bit later so I take the time to wake up. Friday is coming up fast and I’m supposed to go home in the South right after class.. I text my best friends to meet up at night so I can finally see them.

At night, we meet with Paola and her boyfriend, Jules (my supermate while in California) and Thibaut (a great friend from medical school and later on, my roomate). We laughed so much that night, my ribs were hurting!

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My friends wearing my wig Ha Ha!

Thursday, I am so tired. The shots of Granocytes are not making it easier neither. I’m present in class but my brain is dead. I go home and sleep after it’s over.

Friday, after class I go with Mika and his roomate to a friend’s place in the South of France, not very far from my place, for her bday. In Montélimar.

I was supposed to go home but I negotiated the night off with my parents! We do a nice diner at night and the morning, we go to the farmers market get fresh food for lunch.
After eating, I go home.

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Words

This entry is part 20 of 21 in the series Oldest to latest posts

Sunday, September 18th

I’m writing from the train that is taking me to Paris.
It’s been one month since I’ve started the treatment.

Tomorrow, I’m going back to school. 

Last year to finish with my studies.

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I’m pretty excited and curious. There is so many things I don’t know. How this year is gonna go? Will I be able to attend my classes ? To succeed this semester? Will my new mates be cool? Will I go to my classes with my hair shaved or wear a wig? Are my teachers going to be great ? Will I be able to hang out with my friends? Well, at least I’m trying. I’m in the train. The door is open for new adventures. I love my family but I feel something inside of me is dying when days gets the the same and predictable. Maybe the innocence of youth. I need this taste of challenge and new. And I want to show that I can do it.

Since nothing in my case is guaranteed. It felt wrong and presemptuous to buy an agenda. Too scared to put date on things and end up not being able to do them as it is planned. Like write down the day of an exam and not be able to show up. So I bought a simple note book. It’s red and the cover says “ I love lists”. Well, anyone that knows me can tell that I do love lists. So I’m gonna make lists. No date, just ideas of things I would do. Just the promise to myself that when I will be able to or have an ounce of opportunity, I will fill the mission.

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My name is Sally, I’m 24, I have blood cancer. I’m not free to choose how I want to devote my whole time and if I want to get treated. Because I didn’t choose to get sick in the first place. But I have unlimited possibilities of choices for the rest. I’m still who I am. And I do what I want.

Week-end and Friends

This entry is part 18 of 21 in the series Oldest to latest posts

Friday, September 9th

I slept a lot. So I have some energy for when my friends arrive tonight.

Paola is coming. She’s sort of my best friend. We met first year at the uni. She’s very independent but very cool and caring when you get to know her. We don’t skype 6 times a week or whatever. But I know she’s here for me. And every time I come back to France, I spend few days hanging out with her. We had so many great moments. Ski weeks, nights in Paris, week-ends in Normandy, the year in California! So many memories. In California, we were roommates! And we also shared a car. Oh and how can I forget, the spring break in Cabo San Lucas! Damn! To put it in a word: We lived ! And I look forward to many more moments!

And there is Mika! A friend I met from Paola. Very cool and caring. I’m touched he’s coming too! I hope we will get to know better each other !

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The time they get here, it’s already past 8PM.

Too late for the sunset but we still go to Cassis, picnic in front of the water! With tons of food and Rosé.

After diner, we are all pretty tired so we go to sleep to be ready for tomorrow.

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Saturday, we brunch and then go to Cassis around noon. I show them the first Calanques but my mum doesn’t want me to hike to the second one under the sun and since I’m not 100% at my full capacity. So it will be for another time. The Calanques are beautiful but to reach some of them, you need sometimes even 3-4 hours of hike. But it’s so beautiful and the little beaches there are very dreamy. I will do it soon and take pics!

We go to the beach. On the way, we pass by our car and someone tell us that the car is open. What ? Well, apparently my mum left the door open… I feel bad, she’s kinda acting with half of her brain working these days but I know it’s because of me and all the stress. The battery doesn’t start anymore so we have to call my dad to help us.

Anyway, we go to the beach. The water is good! And we play cards. Tarot.

We go to a little beach bar with the view on the water. Very nice. My brother joins us. I take a large detox cocktail.

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My dad come. We have to call maintenant because it doesn’t start, even with the cables. We go home. It’s passed 6PM but like the perfect time to hit the pool because it’s not exposed to the sun anymore.
It feels great, with the beers and beer without alcohol.

At night, we decide to go out. The thing is, entrance is free at the rooftop before 9PM. So we eat fast. I skip my nap as well.

Once there, the queue is too long, there is no way to make it before 9 so we decide to go get a drink somewhere else first. I take an espresso. I kinda need it actually.

Then we go to R2 Rooftop. It’s a “Back to School” night, with very old mix like Love is Gone. I hope my friends don’t take the people from Marseille and the South for retards. Ha Ha. Normally, the music here is cool. Anyway, we enjoy the moment.

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The next day, I wake up and feel super tired and weak. I can barely stay conscious. So I ask my dad to take my vitals. 8 of tension instead of 11-12. Hypotension. I guess dancing till midnight got all my strengths now that I am a grandma. Also, I think I should maybe not skip my naps …
I eat a bit and then my dad decide to drive us around Marseille so I don’t walk feeling like this.

We go to eat a Couscous. Yummy! Plus in Marseille, it’s like so CHEAP. Less than 10 bucks for huge couscous plate with all kind of meats. We share one with my dad and I finish my whole half!

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My friends leave back to Paris already! I feel the week-end was too short! But I will see them in a week.

When I go home, I sleep. I sleep a lot. I need to do the Granocyte shots and it hurts and make my sleep really uncomfortable. I don’t like it.
My belly also is not happy. Too many medications and total hormonal disorganization since I took off my contraceptive implant. I hope it will go away soon.

 

 

Back in France and Cassis

This entry is part 8 of 21 in the series Oldest to latest posts

Hello friends,

I am back in France ! The flight went well and the last days flew by so fast ! I am a bit saddened to leave my boyfriend there and cut my stay two weeks shorter but I feel relieved to be back next to my parents. These past few weeks have been intense with all the stress, appointments and surprise.

I even did a panic crisis! Like a real and intense one! While watching The Diner Game with my boyfriend. I guess just too much to cope with and I felt drowning. But no! I’m very alive and I’m actually feeling pretty well !!!

Of course, I am starting the treatment  right now, so I will need a few days probably to update the blogs about everything going on!

On my planning, surgery to pose the MediPort, first chemo, first appointment with the Psy and the Gynecologist doctor for fertility, new haircut, my new hospital and the new oncologist who is helping me, the different treatment he propose, other free services offered at the hospital like hypnosis (haha sounds crazy and fun I like it!) and of course so more!
How to juggle bewteen class and chemo, how to do the hair and make up when the time will come to shave, … Who knows!

Btw, this is exactly why I titled this site Who stole my Mojo?

The cancer stole my Mojo but I’m gonna get it all back, my independence, my self-confidence, me feeling good about myself and how I look.

Bonus, I share with you few pics of Cassis, the beach city next to where I live in the South which is so beautiful and colorful! Let me know if you like it! (Ps – Another reason to come visit me!)

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Cap Canaille

Mussels and Fries with my Mum

Cute little hidden street

Unexpected visit

This entry is part 4 of 21 in the series Oldest to latest posts

During my hospitalisation, I got an unexpected visit.

A man knocks on the door and enter my room where I’m lying on the bed, my boyfriend on a chair next to me.

He introduces himself “Hello, I’m Mr. Wayne Earl, I am a chaplain.
I visit the patient to see if I can help them with anything and if you want I am also often downstair, at the Chapel. Feel free to join me there.”

I am like a super non religious person and I was always kind of scared to talk to these people, especially in the US with all the craziness around religions while in France we get used to a laic system..
But my boyfriend is super chatty with strangers and, as always, he starts conversing with this man. He tells us that he lived in a lot of different countries especially in Saoudi Arabia, Belgium and France because he was a teacher and also served in some churches.

We start to talk in French and I can tell he didn’t practice since a while and was enjoying the occasion he doesn’t seem to get much often.
He asks about my surgery and what happened, info that I tell him. He looks at me with a caring but concerned look. Then, he says bye and start walking out.

But, finally, he turns around and tell us

Have you heard of the movie The fault in our stars ?”

Yes, of course we heard about it, we even watched it together and i remember how my throat felt so dry I couldn’t stop myself to start crying. The movie had also a beautiful and noble message in the drama.

“Well.. the girl in the movie, Grace, it’s kind of my own daughter. You see, my daughter Esther Earl met John Green at a fair and he became a close friend of our family. My daughter wrote her own autobiography, which is called This Star Won’t Go Out. She passed away 5 years ago… John got inspired by Esther, her personality and her strength and humor while she was sick and wrote about Grace, the girl of the book, thinking about Esther. He dedicated his book to her.

I think I am telling you all of that because when I saw you at first, you appeared to me as being so young, like my daughter, and also you speak French. Esther loved France. We lived in the South for a bit, really close to where your parents are located. When Esther got sick, we went to the hospital in Marseille before deciding to head back to Boston to pursue the treatment. Now, I am taking care of a foundation also called This star won’t go out , to help kids, teenagers and young adults with cancer and finance their treatment.

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The book of Esther

John Green with the foundation’s bracelet (that I got offered by Wayne but lost ..)

 

And then, he left. Leaving us astonished. I think i had a lot of questions for him that I would have like to ask.

After searching some additional info on the internet, I saw that he did a TED Talk “Dying is inevitable. Living is not.” talking about how it is important to try to live a full and happy life rather than focus on the term of life and the disease effects.

I also found an interview of Esther’s sister (his other daughter) talking about the similarities between the Grace in the book and the real Esther. How so many sentences in the book sounded like it was actually Esther talking. But the saddest part was that the love story never existed. Esther died very young, at 16, after fighting during 4 years her cancer. But she has known another type of love, the love from her family during this hard battle.

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