Radiotherapy, hair and boyfriend

Thursday, November 24th,

It was my first radiotherapy appointment !

Radiotherapy isn’t at all like chemo! No drugs nor IV! It’s radiation! Not nuclear but particle accelerator sent directly where the tumors were located! It burns the cell by dammaging its DNA and, in theory, only sane cells can repair themselves!

However, this increase risks for secondary cancer in the the region where the radiation happen! For me, since I’m a girl, it could be breast cancer! The doctor told me she will discuss it with me more in details  at the end of the treatment in case my breasts received a little radiation!

Secondary effects according to her are like discomfort to swallow, skin burns and fatigue mostly!

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Brown wig

 

 

 

 

I will not have heart radiation and only a very little radiation on my lungs! 

The only really annoying thing is that the appointments are EVERYDAY ! And that I take like 1h30 roundtrip house – hospital !

15 appointments in 3 weeks for a total dose of 30Gy.

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Blond wig

To avoid doing tattoos on my skin for radiation targets, they created a chest mold in resina ! When I get there, I lie on a table, they put it on me, it’s really tight, and then they fix the chest mold to the table so I litterally can’t move even one millimiter away!

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the wig collection

 

 

My boyfriend finally came, after 3 long months, it wasn’t really easy the distance and going through cancer and treatment for me like for him! We talked about it and I still was really happy to see him, even these 5 little days! We went to Nice and Barcelona ! I had a really great time and I hope to visit him as soon as I finish treatment ! I’m thankful he was here for me during treatment, even if he wasn’t really comfortable talking about the medical stuff! I was strong because I had him on my side too!

My hair that felt aren’t growing yet, but its normal, it should grow pretty soon! the one that stayed grew really weird and all thin and weak so I shaved everything again so they all can grow together now! 

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5th chemo, exam and Halloween

Thursday, October 20th, it’s time for my 5th chemo.

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I bought some grey, black and blue masks instead of the regular hospital one. Not that it makes it look better but at least I have a feeling of trying  to be original.

I’m super happy because my white cells went up and I’m not in aplasia anymore. The doctor gave me the authorization to do the chemo instead of postponing it like it might have happen. So Yes, I’m going to Paris next sunday for sure!
Thanks to the injections of Granocyte that worked better this time! Last friday, I felt the pain from it so bad in my hips and pelvis. I was walking like a 90 years old grand ma, rounding my back.

14907744_10209875831866382_582932191_oBy the way, I learn how to do the shots myself !
Normally, I do them in my belly but when I took the video, my belly was hurting so I did it in my thigh.

After this chemo, I went home to sleep for two days straight like usual.

Sunday, October 23rd

My grandma arrived from Lebanon this morning for few weeks. I stay with her a bit before taking my train to Paris.
It’s pretty funny because I don’t think she really realized that she can’t give me a kiss or hug and so she went into full mode hugging and kissing me everywhere on my cheeks. And I could see my mom turning pale, scared that I get some bad bacterias or virus from this exchange. Hopefully, I’m not in aplasia anymore.

Once in Paris, I go find Paola. I bought her (and myself) a ticket for The Swan Lake on Ice for her birthday. It was really awesome to watch and made me relax and appreciate the beauty of a ballet on ice. Then we went to have diner before going to bed.

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Monday, October 24th

I have two exams at school today. Which I did not really prepare since I was mostly sleeping these past 4 days after chemo. Also, it was quite hard to focus and study in advance the week before that because I wasn’t even sure they were gonna allow me to do chemo on time because of the aplasia.But I don’t think I did poorly so good!

I have another exam early tuesday morning but I started to feel pain in my belly. I ended up not going that day to rest. I feel that this time, chemo really took a big hit on me and I’m just SO TIRED and hurting.

Wednesday, October 26th

I still feel tired but I try to go to a programmation exam (computer sciences). The teacher releases the exam material and I start reading the questions.

I know what they are asking and I know that I know what to answer but I just can’t connect to my brain to answer. It’s like the door to my memories is locked and I don’t have the key. I just hate the feeling and I start panicking.

I’m not the type of student to get poor grades. I don’t think I’ve ever had really really poor grades before…
My heartbeat starts going crazy and I start feeling really weak, like close to pass out. I know I should tell the teacher and reschedule the exam. Everybody would be understanding in my situation but I just don’t know how to quit. I never do !
So I stay !

I cover my eyes with my hands and start breathing slowly to decrease my tachycardia. After 10 minutes of pause, I go back to the exam. I’m still not feeling so well and remembering much but I just try to do my max. Never mind. I won’t get a good grade but at least I did it. I went to that exam while going under chemo treatment and I tried.

Memory problems are common under chemo. It’s called “CHEMO BRAIN” and it sucks! It does! It feels like I miss half of my brain and I often forgot things. I just hope I will regain my full cognitive functions once my treatments are over but I’m kinda scared I won’t.

I still can do most of the things but I used to have like a GREAT memory. And now, I can’t find my glasses or my phone or remember if I took my meds, every day.

Once home, I just start crying. I feel so exhausted and I just hated what I’ve put myself through today. I know anxiety is not good on my body right now which already has to deal with hardcore treatments. And I was so scared to go through this giant black hole of a brain.

I talk with my cancer pals, Soizic and Liza, who tells me that I’ve done already so much and that I should not hate on myself for having some difficulties, that everybody does and that I’m brave to try anyway. And I go to sleep.

Thursday and Friday, October 27-28th

I finish my classes and my last exam and I’m finally on weekend ! My friend Sabrina joins me and we go shopping for Halloween at some Goodwill and vintage stores.

At night, I have a Boston reunion night with my Boston mates! I’m pretty excited to see them. They witnessed what happened to me in live there but I didn’t see most of them yet since we came back to France!

Saturday, October 29th

furiosa

This week, I told Mika “Let’s celebrate Halloween” and it turns out he and his roomate, Antoine, are down to host the party. YAY!

I didn’t see much people, especially during aplasia, so now that I can, I’m pretty psych by celebrating and doing social activities when I can!

I choose to do Furiosa, in the Mad Max movie. I did everything by myself and for less than 20 bucks! Pretty proud!

Sunday, October 30th

I’m already back to Marseille. Next chemo is wednesday, November 2nd. I’m not very excited but it’s my LAST one!!
I kind of want to do something funny for the occasion but I’m not sure what! If you have any suggestion, you’re welcome !!

Back to School in Paris

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

Sunday, September 18th

I arrive at the train station in Paris.

My friend Paola and her boyfriend come and welcome me back. My parents insist that I wear the mask because there is a crowd of people and a lot of virus during this time of the year. So I’m watching out carefully and it’s a bit stressing to be on constant warning for infection risks. Hopefully, once I see my friends, I feel better and reassured right away.

We go to Paola’s boyfriend appartment, eat some pizza while watching The Voice Kids. It’s funny that they watch the show too!

Around 9pm, I order a Uber to go to Mika’s place. He has a media company with two co-founders. They also are roomates and during the day their employees and interns come to work. The appartment is big, with 3 floors in the South of Paris, near my school and the 13th district.
At the entrance of this big flat, they have an independant studio with its own private bathroom, empty. So Mika proposed me to move in when I need a place to stay the time everything settle down with the treatment and everything.

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Their company is called Purée Maison (French for mashed potatoes). They do love potatoes tho and even tattooed themselves with a super potato.
If you need help with photography, filming, communication campaign or website creation and management, they are great and you should contact them!
It’s insane to witness how fast their company grew and the quality of their actual clients, sometimes big brands name!

screen-shot-2016-10-05-at-11-21-23-amPurée Maison

When I arrive, we decide to watch an episode of Black Mirror before going to bed, a weird but very interesting TV shows on all the extremes that could potentially derives from technology and the web.

Then, I go to bed! Tomorrow, it’s the first day of school. At 9.45AM.

I’m doing the last year of my French master in Accounting. I have class two weeks in a raw, every two weeks. (So two weeks per month basically)
It is made this way so my classmates can both study and work for a company on the other free two weeks. The good thing with this format is that companies actually finance you the whole year. That’s kind of what I was planning to do so I don’t have to pay tuition, but Bob the lump decided another way. My parents had to pay another $9,000 and it made me feel bad. (Last year for BU, I had already done a student loan so …)

Also, while I will have class two weeks per month during Sept-Dec and April-July, I have off January-mid April for the tax season so I can normally work an internship. I was supposed to go back to California and continue my internship with the public accounting company where I worked last Fall but with this happening, I decided to make them aware of my situation and put this project on hold.

I’m not sure what I will do yet during that time. I’m first waiting to hear if I’m the right road to remission once I have the PET Scan. Pretty soon actually!

Monday, September 19th

I’m very pleased to be with my good friend Corinne, with who I was studying at BU, in class. The school did it this way so she can get me the class notes when I can’t go and so I have a moral support in class.

I went to class with my shaved hair. With just a beanie for outside so I don’t get a cold.

In my class, we are around 30. Most of them are a year younger as I took a gap year in the program to do the master with BU. But I have 4-5 friends from my promotion, a nice little group of friends!
The first class goes well and so we decide after it, to go to a friend’ apartment and cook some pasta. We buy beers and apple juice (for me) to celebrate the start of this school year.

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After classes in the afternoon, I go meet a friend at a café and go shop for some jewelry, ear cuffs and hair accessories. I kinda stop wearing all of those lately. Didn’t wear ear cuffs since like 3 years or so. I don’t really know why, just felt it was overwhelming my face. Now that I don’t have hair, I feel it helps boost my feminity because I look like a tomboy.

Then I go meet up with Mika and Paola at the apartment for a photo shoot.

We talked about it few weeks ago. I told him that I would be pretty excited about a photo shoot with my shaved haircut so I can have souvenirs of how strong I was going through this situation.

 But as soon as I arrive and see the big scene and all the camera and photo materials, I feel not very at ease. Over-exposed. Especially without my hair behind which I normally hide.

We start and I don’t really know how to pose. I’m so bad at doing it. Feels unnatural.

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At some point, Paola tries to give me directions on how to do it. She shows me how she pose. It looks like pretty easy for her. I guess some people are just born with the talent Ha Ha. I try to do the same but it looks not very convincing.

She tells me

Sally, do like this with your hair. Play with it a little bit. Like this!”

I see her shake her very nice and long hair, bomba latina way. And I stop moving. Mika too.

Indeed, I do not have hair anymore so I don’t really understand her advice. Ha Ha! Thanks Queen Paola!
Mika tells her.
“Pao, are you serious ?? “

But that’s fine, it makes me laugh and helps decomplex. I mean I really am bold so let’s be at ease. We continue the shoot.

At one point, I try my wig on. Oh, I totally forgot to post about it. I bought a new wig! So much nicer than the first one and for so much cheaper!! I was walking with my mum in Marseille when I passed by an Afro hair care shop. They had ton of wigs in the window so I decide to check it out. Turns out they have beautiful wig with natural long hair with my original color for €150. Damn! I can’t believe all the cancer care stuff sells theirs for a grant!

I try one on and it fits and look very natural on me. Apparently, I can even curl the hair with a hair strengthener. Sick! We buy it!

14518241_10209557807835980_1149807410_n-2The Wig

During the shoot, I put it on and it sets me free. I play more with the camera, even Mika notices it. I think I still need some time to accept myself this way. I remember too much the “old me” and I fear people’s look while they notice how much I changed. I don’t want them to pity me!

Tuesday, September 20th

Classes go pretty fast! I feel great to be in there and focus on something interesting and learn. I honestly feel less the symptoms of the treatment this way and the fatigue. I feel like a normal young adult in the middle of all these other classmates. Not like the epicenter of the attention, like at home with my parents.

I know it’s normal for them to be worried. I don’t blame them or anything. I know my dad save my life! I know that. I’m like the never really worry girl about health stuff. I was never really sick and I can’t remember last time I went to the doctor for something. I don’t think I’ve ever really did before this. So my dad did, indeed, save my life by pushing and forcing me to go see the doctor and do the IRM.
I would probably turned in myself at the ER once I’m really already in a bad shape, like caughing crazy and feeling very very weak. Probably stage 4B  like a lot of people on the web forums or even never really show up… I don’t know I guess I don’t really want to imagine. He at least probably spare me from going through a harder and longer chemo treatment. Probably!

So thanks daddy! I love you!

At night, I go see Corinne and Barbara (who was also in Boston with me).

Wednesday, September 21st

After class, it’s already time to go back to the South of France at my family house. I will miss two days of classes. Thursday and Friday. But I have to! I have chemo tomorrow morning. Already.

I know it’s gonna suck for few days (I will mostly sleep so it will go fast) but, then, I should be able to return to Paris for the whole week of class on sunday night! Can’t wait!

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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New Hair and Color

This entry is part 11 of 21 in the series Oldest to latest posts

I have long hair since I’m maybe 8 years old!

But, knowing I have chemo coming, I figured I should get them shorter to get used little by little to their new length (or future non-existence).

I’m a bit scared but I’m telling myself it’s now or never since i have surgery tomorrow and the day after tomorrow, chemo starts, after which I’m afraid to be tired and weak.

I call my mum, who is super glad, after begging me for like 2 years, that I finally accept to cut my broken, old and flat hair shorter to get some volume.

She tells me to go to her favorite and cheap hairdresser, Nadia, in Marseille. Normally, I would never accept to leave my hair between a stranger hand, especially if I hear the word cheap, but I’m like you know what, if it’s bad then it will be easier to cut and I won’t regret it!

Once there, I have no idea of what I would like to do. So i ask for the famous booklet to get some inspirations for very not inspired people!

I land on a page with a great haircut ( and a great girl). Of course, I don’t expect the haircut to be the same on my face but let’s go. I don’t want to think about it too long. I just want to be spontaneous.

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“It’s for the haircut ?

Haircut and color!

– You are sure for the color?

– Yes !”

She takes the scissors and just cut it all in half a second!
Wow. Well, now it’s too late to regret, that’s for sure!

I wait a bit for the color. It’s probably not the best quality and I feel she’s scratching my forehead skin to try to make the color stain go away…

Finally, after adjusting the haircut and doing the brushing, it’s done!
I just hope my mum will still recognize me like this. I think she will.

I join my parents and grandparents at the bar where they are all saying nice things “It’s so beautiful! It’s 10 times better”
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Apparently, it’s a success! Alright. Even if now, I feel I will care a bit more about loosing them. That’s fine It will grow again  better and stronger I tell myself!

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Well, I’m just not really good with selfies in general!
I’ll put more pics in the following posts !