6th chemo and break

Dear readers,

I’m finally back after a month leave from the blog. I didn’t want to abandon it like I did, nor the writing and sharing. I guess these last few weeks have been pretty rough. I always thought that the hardest part in having cancer and going through treatment would be the physical side effects and the uncertainty of if you gonna end up surviving or not. But it’s actually far from being the only challenge. And it is almost the “easy” part as you don’t have to make much decisions, you are being told what to do…
After-cancer is a mental battle. And that’s what I have been struggling with lately.

According to my psy, I suffer like most of other cancer patients of symptoms like PTSD. I know that sounds pretty funny as I did not got in war zones as veterans. But I kinda went tho, inside my head.

You see, for the past months, I have been living day by day, not making much plan, just to go through each day of treatment and try to make it as best as I can. I didn’t care at all of what would come after that, because I was not sure I would have the chance to be able to make futur plans too far…

When my oncologist told me that my scan was really good and that, if the remission is confirm on my final TEP scan post radiotherapy, which will be on January 19th, I will be finally FREE, I started to get scared. That I wouldn’t be able to go back to normal life.

It’s like the who I was, young, going out with friends, thinking about long term career goals and travels and the who I am during treatment, avoiding bacterias, staying in, resting, trying to not push my body too hard, no smoking, no drinking, no risks are battling.
One is telling the other that she is doing silly stuffs!

So at what point should I come back to the person I was before? Should I even ? Could I ? There’s no real answer according to the psy, only time is needed. I need time to trust my body who once betrayed me. So I can live without all those fears. But how could I really when the oncologist tells you that you will still be monitored at the end of the treatment because relapse occurs. In my case fortunately, relapse risk isn’t very high, but still slightly above 10%. This is not including damage from a tough treatment on the heart, lungs and rest of the organs nor the risk of secondary cancers, increased by the same treatment that save me from dying from the first!

I guess I do need time. Day by day, when feeling better and  better, I’ll learn how to trust life again! I’ll learn how to project myself in the future, more and more far everyday.

Don’t get it wrong ! I love not being worry about the day tomorrow, like i could disappear in the time between that. But it is just not really applicable with the life going on. And also I do believe that life consists in wanting stuffs! Being indifferent is like being dead.

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Wednesday, November 2nd,

It was my 6th and last chemo !

I went with my parents ! We did an apéro at the hospital with non-alcoholic beers and snacks! And took videos! Maybe I’ll do a little surprise and share it soon !

But white cells were OK but not my red cells! I was in anemia! And close to do a perfusion of blood so it can get back to an OK level! The thing is that since it was my last chemo, it wasn’t critical so I didn’t not do it! But the round because of the anemia went rough!

Red cells are transporting the oxygen and are necessary to be able to breathe, live and move correctly!

I basically spent the entire week in a bed, couldn’t stand up more than few minutes because I was really weak. My parents were trying to feed me some red meat for the iron to help but it was so hard to even get hungry and digest something that difficult!
Hopefully, the shots of Granocyte came at Day 6 to help boost my system and the weekend of November 13th, I was back on my feet!

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Sunday, November 13th

I headed to Paris for 10 days of class and exams. Since I wasn’t able to study the day before, I had to catch up a lot of materials in a really limited time! The weekend after, I went out even though I was tired, but I was just really glad to have the occasion to! I drink a bit of alcohol, nothing strong really but I did it! An additional step back to normal life!

Wednesday, November 22nd

After taking my last exam, I went back to get my stuff and left to Marseille! Already!
I cried a little! I was scared to start treatment again after feeling much much better lately and starting to enjoy my life again! Last chemo was already 20 days ago!

Tomorrow, Thursday, November 24th, I start radiotherapy !

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 !!

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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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!

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.