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!

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!

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.