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…
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.
For 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!
(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.
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.
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.