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 !!

PET Scan Results !

Monday, October 17th

It was the moment I was waiting for since days with my parents. THE PET scan to see if chemo is working on me alright.

My doc already told me before that there is a great probability it is. And if not, there are other chemos and other treatments to try. So I tried to keep an optimistic mindset !

Once lying in the scanner, after an hour of IV perfusion with radioactive element, the assistant tells me

I’m gonna inject the iodine now. It’s going to feel like it burns. Don’t worry, it’s normal. Try to breath peacefully and it will be soon over! Good Luck!”

I’m like, what is he talking about ? I never got Iodine during my previous PET scan. And it started to burn. From my oesophagus to my bladder. And I wanted to pee so bad! Omg. Really not pleasant. Hopefully, it only lasted like 3 minutes. WOW

When I got out, someone tells me the doctor is going to see me for the results. My dad comes with me. I arrive in the little room where the doc is screening all the PET scans and writing the results down. There’s one screen showing a scan with a patient full of cancerous lymph nodes at upper level of the body. More than I had when I begin even. I’m like … Huh

“Hey Ms Sally, so I reviewed your PET scan and I don’t see any evidence that the cancer is left! Which means that once your treatment is over, you are done. Congrats!”

14813213_10209776425301280_1466929735_oThe Scan at the top is the recent one. The one below is from last July. And on the left at the bottow , the conclusion saying there is no detection of the cancer activity.

Of course, I start automatically shedding tears, very moved. My dad too! I smile and thank the doctor. Then my dad call my mum and the rest of the family. I hear them laugh of joy and it warms my heart. I barely can talk back to them as I’m still under a great deal of emotion. It feels AMAZING to know that I’m almost done spending my whole life at the hospital or sleeping because of treatments. And that I’m going to live. Not just months or few years. Just live.

My dad propose to celebrate at the restaurant. So we go and I get a delicious goat cheese and honey pizza. YUM

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SO WHAT’S NOW ?

Well, I still have 2 chemo rounds left and 3 weeks of radiotherapy. To secure the remission.

As you might already know, we don’t get instantly cured of cancer. We enter remission. Which means that the scanners and medical screenings can’t discern evidence of cancer. Which is of course amazing!
However, active or latent cancer cells can subsist in the body (and in my case, in my lymphatic system) and be undetectable. This is why I have to finish treatment to give me the best chance of complete remission without futur relapse.

Radiotherapy especially is going to irradiate little zones where I had cancerous lymph nodes and break the DNA of the cells around. Only sane cells can repair themselves and survive. The bad ones die.

So that’s the super news! I will finish treatments on the last day of radiotherapy, which is December 16th. Right in time for my 25th birthday and the year end celebrations !!

I feel so relieve to see the light at the end of the tunnel! And it gives me the motivation I needed after this past week to finish the battle!
Around 8 weeks after the last treatment (End of January – Beginning of February), I will have the final PET scan to confirm my official complete remission and to demonstrate that the cancer is not coming back right when the treatment stopped.

Then, I will have scans and doc appointments every 3-4 months and then 6 months during 5 years. After 5 years of clean scan, you are considered totally cured since risks of relapse for Hodgkin’s lymphoma after 5 years of remission are very rare or even inexistant!

4th Chemo and Theater

Wednesday, October 5th

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

Thursday, October 6th

Time to fight. Round 4.

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

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

-Yes, I did ! During three days.

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

-No, my dad or a nurse do them.

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

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

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

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

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

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

Friday, October 7th

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

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

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

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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.

Shaved hair

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

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

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

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

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

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

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

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

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Two of them

 

 

 

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

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

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

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

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

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

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

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

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PS

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

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Second round of chemo

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

Wednesday, September 7th

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I go home with my dad.

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

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

Chemo effects

This entry is part 15 of 21 in the series Oldest to latest posts

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

This entry is part 14 of 21 in the series Oldest to latest posts

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

This entry is part 13 of 21 in the series Oldest to latest posts

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.

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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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