Third round of chemo

Thursday, September 22nd

The night was short ! I arrived in Marseille around midnight and I’m already awake at 6.30 in the morning before heading for my next the chemo.

14632664_10209650285347860_720810437_oFirst, I have to see the doctor.

This time, I see the intern. She’s young and very listening. She looks at my blood results and my white cells are pretty low.

Not the aplasia yet, but it is clear that I have some trouble to get back to the “acceptable” level after the chemo. And it keeps getting lower and lower. At some point, it’s gonna be an issue!

She hesitates to prescribe me another additional day of Granocyte shot (4 days instead of 3). I kind of make a face and she says “Let’s see next time then”.

She prescribes me the additional antibiotics in case I have a fever during aplasia (I already take antibiotics on a daily basis but those one are very effective ones). It is important to have them on me, especially if this happens in Paris so I can take action fast. In case the super antibiotics don’t make effect on the fever, I need to go back to the hospital.

Then, I wait for chemo. This time, it’s pretty fast.

I got assigned a shared room, where 3 guys, way way older, are getting their chemo. When they see me walking in, they stare at me in a weird way.

I never see other young patients. I know I’m not the only one, but we are never at the hospital in the same time. Also, teens under 18yo are in pediatric services. So I’m constantly surrounded by people three times my age.

The worse is the way they look at me. Kind of “pitying me” and wondering why am I here at my age, having to face all that.

Well, anyway I don’t think there is a right age to get cancer. At least I have some energy to go through treatment. Even though some other stuff are less cool when you are young. The future career, the risks of secondary cancers (because yes, you do expect to live at least another 30 years) and risk of sterility.

There is even a discrimination from banks and insurances for pricing. Some won’t even lend money at all.

In France, you are spared from declaring your past history of cancer after 15 years since the last treatment. Seriously 15 years ? I would be like 40 years old. Of course I would need money in the meantime to build my life and maybe create a company even, who knows ? It’s in talk to be reduce to 5 or 10 years for the “good” cancers, meaning the one you usually survive but not totally done yet and still bullshit!

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Saturday, September 24th

I go to a lymphoma conference. I’m still very tired from the treatment but want to get some info and updates about the disease. There is no young patients. My dad calls a guy “the young one”, but he’s like already 40.
However, it was quite funny.
Patients asked questions and some were quite comical. Like a woman of like 75-80 yo asking why her articulations still hurt years after chemo.. or another patient talking about his weird foot syndrome in front of the whole audience.

Back to School in Paris

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

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.

Shaved hair

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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Week-end and Friends

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.

 

 

Second round of chemo

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!

Get the energy back

Thursday, September 1st

I have 6 days left before next chemo. I feel better!
Yesterday, I went to Cassis with my friend and my mum.

I took a nap under the umbrellas.

Today, we are visiting Marseille with my friend Sabrina. The museums, the Mucem and the Mediterranean Museum. They are really well done and interesting! Plus, they are free for young adults 18-25yo.

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Friday, we went to Nice with my dad. We ate at Pizza Cresci! One of my fav pizza places of all time. They do half moon pizza with very generous toppings! I know this place from spending my summer for years in Cannes, where they have their other restaurant. I don’t feel 100% the taste but I know it’s good so I just try to eat as I can.

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Then, we took a walk on the Promenade. It’s beautiful and a lot of people run along it! As we all know, there was an attack on our Independence day. Very sad story. As every French, and every people in general, I’ve been very sadden by it. We saw the memorial. Full of light, love and message of hope. So we took the time to stop and think a bit.

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On the way back home, we stopped in a place called Les Issambres, between Sainte Maxime and Frejus (basically around Saint Tropez if you are not familiar with the South-East coast!)
The beaches in this area are very sandy and beautiful. My dad always says that these are his favorites!

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At night, we hang out at R2 Rooftop in Marseille. Bakermat was playing that night! We found him cuter than in pics and enjoyed the set for 2 hours before leaving. Ends up we didn’t even see him! Ha Ha. We saw the DJ mixing for the opening. (Silly girls)
Well, we still had fun!

14339181_10209427401135894_346369880_o-2 14315734_10209373735914297_300541760_o-2The sunset view from the Mall “Les Terrasses du Port” rooftop! Beautiful.

Dressed up.

Wearing a silver pant, see that?

 

Saturday, we took a bus to Aix-en-Provence. A nice and very “high life” city, right next to Marseille. (Half an hour max away)

We walked, went shopping (Got some more Lush products for the bath and face mask! Yum) and got a Boba tea. (I don’t know why in Marseille, there’s like only two places I can get one from! In the US, it’s like everywhere … Aix-en-Provence has more Boba café)

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Sunday, we take a walk around Marseille Prado. It’s a beautiful are of Marseille, along the water! Looking very much like California with its palm trees and surfers!
There is also a huge park next to it with people running and exercising. Like I said, very CALIFORNIA. Love it!

We went to take a drink at Sport Beach. I got a Mocktail (Cocktail without the alcohol). During treatment, I can’t! But anyway,  I don’t really miss it so no biggie!

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Sabrina tells me that I look better than when she arrived. Meaning the color of my face and the tiredness level. Indeed, I feel more energetic and healthy !

My mum keeps making me smoothie! I love smoothie normally, but she makes the same every morning, lunch and dinner. Sabrina laughs but I just can’t take it anymore. Feel disgusted a bit since I’ve been drinking that for two weeks in a row.

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Monday, I walk with her to the train station. She’s leaving, going back to her city and starting school.
I come home, rest a bit and find a beautiful baby lizard in the living room!

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On tuesday, we take the apero during sunset with my parents.
Beer without alcohol, taste like Mojito. Very good. Often, my mum and my brother take some too! Just because they like the taste!

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Tomorrow, Wednesday September 7th, it’s my second chemo!
I feel a bit nauseous at night and in the following morning. I guess it’s a body reaction because I try to not think about it.
Anyway, let’s do it, Round 2!

Chemo effects

Wednesday, August 24th, I had my first chemo.

Everyone feels different side effects. I will talk here about the one I felt myself! Also, I read that some people felt good 3-4 days after chemo, while others needed a dozen of days before being back to almost normal. (Which doesn’t give a lot of time to get strengths back as this ABVD chemo is every 15 days).

Day 1 – Wednesday, August 24th

Back from chemo, I take a nap. I wake up at night for diner. I don’t feel nauseous (medications must be working good) but I’m really not feeling hungry. At some point, I smell a strong odor giving me almost a headache and yell

“What’s that ?”

My mum replies “Oups. Sorry I was getting fish filets out of the freezer”
The most funny part is that I was very far from her and usually, my nose sucks. Guess I became the new nose of parfums.
I decided to go back to sleep right after.

Day 2 – Thursday, August 25th

Still not nauseous, but damn! I slept all day long. Like 18 hours at least.
I’m a real bear! Or maybe this kind of dog .

My mum and grandma are spying on me through the half-opened door to get an idea if I’m still alive. “Oh yes, I saw her moved”
At some point, I wake up for a bit and go feed myself with Crêpes with no toppings (Well, I’m French, what did you expect?!)

Day 3 – Friday, August 26th

I feel more conscious that yesterday. But this time, I have nausea. So I take the second, optional, medication for it. I do not throw up. I just feel like … Anyway, I know it will end at some point. I have vomit. I’m scared of it and I could be hungover for days rather than just give up and do it.
I feel weak so I go to the kitchen and nibble on some frosties.
It’s great because it doesn’t have a smell and it’s dry! Perfect. Always loved Kellogg’s cereals.

At night, I feel better so my parents ask me if I would like to join their friends for a picnic on the beach to watch the sunset. Alright, let’s do it. I’ve been indoor for a while and actually can’t wait to step outside!
It’s really pretty here.

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The Adults ask if I would like to join them for a slice of pizza. I’m not sure but I know I do like Pizza normally. I ask my mum and she says I can.

So, I take a little one. I eat but it doesn’t taste like anything.  Like bread with no taste. Hearing the others around saying how it’s good, I figure it’s coming from me. Well, I think I will wait for chemo to be over before going to gastronomic diner! Ha Ha.
My stomach starts working and I feel queasy again.
Alright, next time I will wait a little bit more before taking it to eating complex food.

Day 4 – Saturday, August 27th

I feel better but the night wasn’t easy. I really shouldn’t have eat this pizza!  It feels like that’s it!
I survived my first chemo and I feel good.
Few hours later, I got into intense pain with my jaw. Nervous pain. Also, I can’t open it much anymore. It’s blocked.

Unfortunately, this was the worst part for me and didn’t go away for 2 days. All my mouth and throat was inflamed. Despite the rigorous mouth wash 6 to 8 times a day. I feel like I have gingivitis, toothache, canker sores,  angina or sore throat and otitis. This sounds like a lot but I’m not even kidding! We called the hospital to inquire what should be done. They said that if ever it last more than 48 hours to come and get checked but in the meantime to take paracetamol.

Day 5 – Sunday, August 28th

Still in pain. Sometimes it gets better and then go back to how it was. My mum is pressuring me to eat. I didn’t touch any food as I really can’t move much my jaw… She makes me smoothies and liquid food at different time throughout the day.

At night, I finally feel better.
I ask my dad for some KFC. Ha Ha. I know it’s not the best of the healthy food but the thing is I’m quite disgusted by most of meal options so I’d rather try to eat with something I know I usually like. My jaw is still sore but the nervous pain is gone. I finish the 3 chicken tenders and finally feel a bit filled up in my stomach!
I last 20min in front of the TV with my parents before going back to sleep.

Day 6 – Monday, August 29th

Yes! I feel much much better!
I start eating normally. Maybe in smaller proportions but a bit of pretty much everything! I really want to go dip myself in the pool but I still have to wait few days for the bandages after the port surgery. Also, I can’t expose my skin to the sun. Chemo and sun aren’t good friends, I heard from the doctor…

At night, I receive my first shot of Granocyte, to stimulate my bone marrow to produce cells and avoid aplasia.
Nobody warned me that it has side effects too!
I feel exhausted and I can’t believe I have to go through 3 more nights of pain due to these granocyte shots on Day 6, 7 and 8.
Till now, I have kept my mind positive and busy but I have to admit, that night I was just really fricking tired of all of these.. I was just starting to feel better!

The shot gave me like bone and muscular pain. Like if I was growing up, except I wasn’t! (That would have cool otherwise Ha Ha)
Also, my belly was like burning inside. Probably the spleen.

My mum gave me a little massage on my back to try to calm down the pain and I went to sleep right after it.

My bed felt so uncomfortable that I keep switching sides and positions till I passed out late at night, beat.

Day 7 – Tuesday, August 30th

My friend, Sabrina, is coming today ! I’m still tired from the past night but I’m super excited to have her for a week. We are friends from high school and unfortunately we didn’t see each other since a while because of the distance. So, we have a lot to catch up face to face! I walk to the train station close to my house. On the way, I capture a Snorlax. Makes me feel like it’s my lucky day!

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At night, I get my shot and go to bed directly after.

Day 8 – Wednesday, August 31st

Finally, the day has come I can see the end of the tunnel for a little while. (Well, one week till last chemo but nevermind! It’s great ! That’s all I was asking for.)
Tonight is my last shot of Granocyte! And tomorrow, I will feel relieved.
My dad changes my bandages and I go a little bit in the pool (just the bottom-half) around 5PM when the pool isn’t exposed to the sun anymore.

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At night, I get my shot and we watch The Voice Kids (replay). It’s easy to watch and cute, I like it!

Day 9 – Thursday, September 1st

I SURVIVED ROUND 1.
It wasn’t really easy but I got a great deal of support that made it achievable! So I’m really glad.
I know the coming days will be great to get some strengths back! I will go tour around with Sabrina and have fun visiting new places.
My stomach is a bit messy still but it’s temporary.

Next article will be on this awesome week I spend with her and my family before starting chemo round 2. 

First chemo round

Wednesday, August 24th

I have an appointment for my first chemo!

The night was pretty short. Indeed, I came back at night from the hospital after the surgery to pose the port and I’m already ready to go on both my feet at 6.45AM.

Both my parents want to come but they work, so they decided that my mum will be with me the morning and my dad the afternoon.

After a light breakfast because my mum insisted that I eat (I’m usually never hungry the morning), we arrive at the hospital around 8.15AM. We check-in at the desk and then we wait for the doctor appointment.
The appointment is actually for 8.40AM. In the waiting room, there is a woman really well dressed with a nice dress and high heels. She looks like she could be doing anything, except chemo. I think it’s pretty brave actually. And she, for sure, look way prettier than me, with my Adidas jogging and sneakers…

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The doctor calls us. We talk and he explains how everything is going to be.
Every 15 days, I will have to check-in at the desk and then I will meet with him or another doctor or intern to check on my blood test if everything is OK. Then, I will have to wait for my chemo medication to be prepared at the hospital’s pharmacy. It takes around one hour and as soon as they have a room or box available for me, I will be able to start. However, he advices me to not plan anything else on the same day of a chemo because it could take longer if its busy and they don’t want me to be stressed because of other stuff. Chemo is already enough stressing. It’s nice of him to tell him ! If only he knew that I just have nothing plan for a month anyway, he would understand that it’s not really a big deal for me!

The doctor is signing all my prescriptions and OMG I have so many!
First, I have a blood test to take every 15 days so he can monitor me. Really important because if it’s not really good, I have to interrupt chemo the time to get better and that would be quite annoying for both of us.
What we fear particularly is called aplasia. It’s when the bone marrow doesn’t produce enough blood and immune cells (especially neutrophil cells) and the fonctionnement of the body and the immune system is impaired. A flu during aplasia and it’s a one-way ticket to the hospital till it’s gone. So, he’s taking it really seriously!

Therefore, he prescribes me Granocyte shots (same kind of Neulasta in the US I believe) on days 6, 7 and 8 after each chemo. It stimulates and boost the bone marrow to produce more blood and immune cells. This way it would mitigate the aplasia normally. Let’s hope it works good on me.
Especially since I announced to my parents my decision to pursue my studies anyway and attend my classes as much as I can. It’s gonna be quite challenging because of my chemo calendar and because my school is in Paris (I need to take a long train) but I will talk more about it later!
My parents are kinda overprotecting me right now. So, if my blood counts are too low, I fear that they won’t let me go…
My mum insists for me to wear a mask in public when there’s crowd of people around and keeps putting anti bacterian gel in all my purses. She is my little personal fairy. The doctor says I should wear the mask especially at the hospital, theater,… and avoid the metro in Paris.

14233302_10209346438431877_347695480_o-2For prescriptions, I have two type of antibiotics. One with two pills everyday, one with one pill three times a week.

Anti-nausea drugs. One really powerful, Emend, to take on Day 1, 2 and 3 of chemo. It works by changing the your perceptions of nausea. Another one, Zophren, to take when the first one isn’t enough to prevent myself from feeling like vomiting.

Painkiller for my belly, called Spacefon, for some reason I can’t find it in the US so I always had to take it with me when I went to study there! It’s good when you have stomach pain or your periods even. Finally, I also have to do mouth rinses like 6 times a day during the first week of chemo, because you can have really bad mouth pain as side effects.

A nurse is placing an anesthesia patch on my port so when they sting to put the perfusion, it doesn’t hurt too bad. The region of the port in the chest is pretty sensitive today since the surgery just happened but it should be more efficient for next chemo sessions !

The doctor tells me I can take regular painkiller (paracetamol) for post-chemo but to try to avoid if I can as they are trying to monitor fever (sign of aplasia generally).

In conclusion, I have from 2 to 5-6 medication to take per day. And depending on future side effects, the doctors could add some more. Alright, let’s hope my little belly will handle it all well.

Finally, after a bit more time waiting, they call me to tell me my room is ready! I start the chemo around 11AM. The chemo type is ABVD. It’s a combo or cocktail of 4 different medications. ABVD is the prime treatment for localized and spread Hodgkin’s lymphoma with favorable prognostic (Stade I to IV A). The less fortunate have to go through another chemo, more agressive, called BEACOPP.

FYI, before the Italians invented ABVD, Hogkin’s lymphoma was not very well cured. I remember reading about the first chemo trials, it was made with a derivative from mustard gas… So toxic and agressive that patients were dying two years after treatment. In 1970 and after, ABVD was used and was a great success, lowering the mortality rate like crazy ! I feel pretty thankful for that!

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(My best selfie)

 

They start by giving me antihistamine and cortisone to prevent allergic reactions to the chemo products. Then, the nurse pose the perfusion through my port. They inject me a liquid for hydratation and some paracetamol.

First chemo product is the A. For Adriamycine (or also called Doxorubicine). It’s a red liquid. It takes 15min for the flask to get empty.
This one is probably the worse! It’s the one that makes you loose your hair, color the pee in red, gives nausea and is toxic for the heart.

In Boston, I had to do an Echo for my heart. During 40min, the cardiologist took screenshots of my heart and listened to me heart beat to make sure my heart is strong enough for the chemo. So I should be fine!

Then, you have the D. It also takes 15-20min in perfusion. It’s the Dacarbazine. Also in cause for nausea.

After that, the B. For Bleomycine, which takes 10min. It breaks the DNA of the cells. It’s toxic for the kidneys and particularly for the lungs. When I arrived in France 10 days ago I had to take a test for the lungs capacity. I had to do it two times, it was pretty hard and I was kinda right at the edge for a regular lung. Hopefully, I finally succeeded to inspire and expire enough air like normal people. It would be quite a shame if I didn’t pass the exam while people 2-3 times older do it well.

Finally, the last but not least, the famous V. For Vinblastine. It takes an hour and prevents the cells and particularly the cancer cells from dividing and multiplying. However, it also cause the hair loss, constipation, mouth and jaw pain, weakness and headaches.

I have a TV in the room but I just turn it on for noise background. I talk with the nurses, who are nice and some are almost my age. I will see them pretty often. A woman brings me a sandwich too, but I only eat half. I don’t really have nausea yet but I’m not that hungry.

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My dad might be a bit bored by the length of the chemo and fall asleep for a bit. He also worked all morning and is probably exhausted! It’s true that the chemo is a bit long, I’ll take a book next time. And a blanket too, because I’m starting to feel a bit of chills.

Someone brought me some flyers for hospital’s activities and different type of alternative care offered. Like hypnose, sophrology, yoga, osteopathy, hair and esthetic care, little training to get used back to odor and taste of food, support group,…

So many stuffs! I need to check it out once I know how it goes and what I need. Finally it’s over. It’s 2.30PM and I go back home with my dad.

Now, it’s the unknown! So I hope it will go OK. I decided to take a nap since I’m still pretty toasted from the short night post-surgery.

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The next day, my grandma came to watch me. Seriously, it’s a bit weird since at my age, it should be me watching her. But she’s still young and energetic. Also, she’s always smiling. Pretty crazy when I think about it, I can’t remember seeing her annoyed or mad even when I was a little young and wild animal. She also knows how to make me laugh ! Showing me her funny facebook pics and videos… I doubt most grandmas are that connected. I hope the following days will pass by fast. I will make the next article about the effects of chemo and how it went for me after this first chemo.

Surgery to pose my Port-a-cath for chemo

Tuesday August 23rd

I posed a PAC (port-a-cath or chemo port).

What is it ?

The chemotherapy works by injecting medications (or rather poison) in the veins. But, in order to do the chemo treatment, they need to inject in the arm veins again and again, during months, which can cause a lot of problems because of the products’ toxicity. Also, it often gives the sensation of burning because of one of the product in the chemo cocktail.

For all these reasons, in addition to infectious and safety issues, doctors prefer to pose a PAC when you need many chemo rounds.

It’s a little case with the top covered with a thin membrane to sting directly in it. It’s located high in the chest. It’s linked to a little pipe catheter than goes in the jugular vein in the lower neck., way bigger and resistant than the one in the arm. Everything is under the skin. You can just see the little bump at the surface.

VASC-Chambre

The day before and the morning before the surgery, I had to use betadine in the shower to make sure all the regions in my body are sterilized. It’s very important as the chemo which will follow the next day will attack the immune system as well, making me weak in front of all kinds of infections.

I am on my way to the surgery room. Just before entering, I’m placed in a little airlock room. I see a patient getting out of the surgery room and he seats next to me. He also has a lymphoma and start chemo the following day. He’s around 45-50 yo. He’s nice and we talk. He says the surgery goes pretty fast and it’s not too bad. He asks me questions and I answer, pretty relaxed, so appeased than he can’t refrain from asking me

“But you know what’s a lymphoma right?”

I think he’s a bit worried that I didn’t get that lymphoma is actually a cancer. But I know. I just think that you have to go through these things anyway so I’m just trying to keep an Ok face. Plus, if I can get the Warrior confidence look, it’s a bonus!

Arrived in the surgery room, there are three women. Music is loud. Rock music. I would almost forget I will get into surgery in a few minute now.

They give me the anesthesia shot.

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Fall-Winter 2016 Collection for hospital outfit (not kidding tho, it’s much nice than the old piece of tissu I got in Boston, this dark blue..)

The surgeon and her assistant are really nice. They keep talking to me, ask me which songs I would like to hear. I’ve never done local anesthesia so I’m a bit worried that I will freak out at some point if I feel weird sensations. But they are are really good at making you comfy and confident. It is almost a nice moment that I’m living.

The surgeon tells me that finally the port will be put on the left side, not the right. Because I already got a surgery on the right side, and it might have moved around the stuff a little bit. But to not worry even if it’s closer to the heart, because anyway the jugular vein in the left or the right, it’s the same!

They cut in two places. The first incision is on the left side of the neck, above the clavicula, to pose the catheter in the vein. The second is under the clavicula, high in the chest still, to put the little box. They use the echo machine to get a clear picture of my anatomy and get insurance that everything is placed correctly.

The sensation is a bit weird. Well, I’m not really in pain but it’s still disturbing. Especially since I feel the movement, like the surgeon pushing the cable under my skin…

We keep talking. The surgeon studied a part of her medical education in the US so we compare the cities we went to and tell each other what we liked in each. My heart bump a big time. But since I do pretty often tachycardia crisis (nothing to worry about that), I just feel more stressed. I don’t know I start loosing sensation and feeling like I don’t know if I’m doing well or not good. I panic. I tell them.

They stop for a bit. The time to let me breathe, calm down and take my pulse. My pulse is going back to normal and I start feeling much more normal. Let’s continue and finish with this stuff.

Overall, it lasted like half an hour. Very quick!

When I get out, I station in the airlock room as well. A woman enters the room as well. She’s around 40yo and sitting in a wheelchair. I can see she’s pretty weak. She tells me she has breast cancer, but it has metastasized so she is starting chemo in two days. She asks my age. There’s this exchange compassionate exchange look going on. Like, we just understand each other. The feeling of we don’t know what will happen in the futur, we have no warranty or nobody is telling us you’ll be cured for sure. There is just hope. So I wish her the best and luck and we hope to see each other in the corridors of this hospital during treatment.

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I’m back in the room where my dad is waiting for me. They put me a huge bandage, like Miss USA scarf style. It’s pretty funny but I will only keep it for 4-5 hours to avoid having a big bruise.

Back at the house, it starts to feel a bit painful but it’s not too bad. The anesthesia effect is just going away. When I try to drink or eat I feel the sensation, but I got used to it with the drain in my neck last surgery. And it soon went away anyway.

I can’t put water on my bandaids for a week. No pool for me or well, I just put my feet. I also try to adapt when sleeping, because I sleep on my belly pretty often but I don’t want to press on the port too much at the beginning. I’m just getting ready in my head for the next day (chemo).

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How is it 10 days after

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