ITW n°100: Marie - K fighter (of the Ovary).
Hello,
today the beautiful and extremely determined Marie, 23 years old, tells us about her fight against a K in the ovary discovered in June 2016, during her study internship in Brazil. With great maturity and a lot of sincerity, this young woman tells us about the fight she led as a team with her mother and her sister, because together we are so much stronger!
Another great lesson in resilience, love and life.
Very nice discovery
Let's get started:
Who are you ?
First name: Mary
Age: 23 years old
Profession: Master 2 student in urban planning
Where do you live: I don't really have a fixed address but currently I am in Cergy, at the family home
Why do you agree to share your story today?
-To change the way we look at cancer! We can be young and talk about it without taboo
-Because reading testimonials from K fighters helped me, I felt less alone
-For me, it allows me to look back on this whole story which passed very quickly.
What are your qualities (in a few words)?
Curious, determined, open
What are your passions (in a few words)?
Travel
Urban walking, mountain hikes
Brazilian culture
What K (what cancer - grade if you wish / stage ditto):
Ovarian cancer, stage 1. Grade II immature teratoma.
When was it discovered? How old were you ?
In June 2016. I am 23 years old.
Under what circumstances was it discovered?
I was on an end-of-studies internship in São Paulo, Brazil. For several weeks I had felt a lump in my bladder that I didn't know very well where. It grew very quickly and bothered me a lot, one morning I decided to go to the emergency room. I pass the details on the public system of Brazilian hospitals (no equipment to give me an ultrasound). Seeing a mass on the x-ray the doctor told me that my bladder was full and that I had not been to the toilet before. I finally went to a private hospital... tumor of 16.5 cm in diameter on the right ovary! I was flown back the next morning to have surgery in France.
If you are currently undergoing treatment, or in remission (for how long?)
I finished my last round of chemo on September 26th. My control scan and my latest blood tests are good!!!
Can you summarize your (K fighter) story for us?
When I returned to France, I met my surgeon directly who told me that we had to operate quickly but before that we were going to do tests, to find out a little more about the nature of this tumor.
Until then, what worried me was having returned to France, having interrupted my internship, having scars because of the operation but the idea that the tumor was cancerous did not occur to me. really came to mind.
So I did MRIs, ultrasounds and blood tests. My left ovary was intact and my markers (CA125) were low so I was told not to worry. “Normally” it was good!
The operation went well, using laparoscopy. Quite a bit of abdominal pain the week that followed. In my head I had to get back on my feet quickly because 3 weeks later I was going back to Brazil to resume my internship. The insurance had already taken my tickets. Just wait for the results of the anapath! Everyone reassured me, telling me that with a tumor of this size, if it was cancerous, I would have had lots of other symptoms and then no one in the family has ever had cancer!
2 weeks after the operation, we learned that they found rare cells in my tumor: immature teratoma. My file will be presented at a conference on rare tumors in Tenon to find out what protocol to put in place, if reoperation is necessary, chemo or radiotherapy.
Strangely, what was most difficult at the time was not knowing that I had cancer cells but not knowing what we were going to do, having to wait again.
After another 2 weeks of waiting, I learned that I would have to do 3 courses of chemo (BEP), (3x 21 days) but that before that I was going to have to do an egg retrieval to make little mister- gamete frizz because the chemo risked damaging my remaining ovary!
What treatment did you have?
chemo: if you have had it: (name of cocktails / number of sessions)
So I had 3 BEP cures over 2 months.
15 sessions of VP-16
15 sessions of Cisplatin
9 sessions of Bleomycin
Once every 3 weeks, I spent 5 days in the hospital with VP-16 and Cisplatin every day.
Every Monday I had a Bleomycin session
operation if you have had one (how long were you hospitalized):
oophorectomy and operation to insert the chamber on an outpatient basis for both.
other:
I did egg vitrification before starting chemo.
I had to do 2 weeks of injection to mature my eggs, I had ultrasounds regularly to monitor progress.
I then took the sample under local anesthesia. We managed to collect 2 mature and two immature eggs! It's not much but I'm really happy to have been able to do it, it gives hope :)
The PMA team in Cochin is really great, a great teacher!
What tips directly related to K do you want to share?
1/ chemo: (ex: your tips, the helmet, your affinities with nurses):
I was a little worried about not finding my place in this small oncology department where the youngest patients were 50 years old, but in the end it went very well. I was really well received by the entire service. All the caregivers took care of me, and gave me lots of little attention because of my young age! To make me more comfortable, the nurses reserved a single room for me.
I tried the helmet during my first treatment, then I lost my hair! I coped with it pretty well. I wore it 20 minutes before and 30 minutes after infusions of hair loss products. So it was about 3.5 hours a day, with helmet changes every 30 minutes. The most important thing is to cover the rest of your body and your neck well so you don't get too cold. I tried to wash my hair as little as possible, I hardly combed it. I was taking brewer's yeast capsules...
I give advice but it didn't work for me, I lost my hair 21 days after the first session. I think my hair was still too long. I had them cut off at the chin before starting chemo.
How did you live the day before, the same day, the days after chemo?
and what were your tips?
My treatments extended over 3 weeks (D1-> D21)
It was always a little nerve-racking on the Sunday evenings before the full week of chemo. I was trying to relax, have dinner with my family and see my friends.
After the 4th day of chemo, I started to feel the side effects of D1 (bloating, yuck, etc.)
Days 6 and 7 were the worst, I had really bad nausea and I was knocked out. I spent the weekend lying down. At those times, I really had little appetite. I ate a lot of salads and soups. I drank several liters of tea a day!
From the 2nd week I started to regain strength but the bloating was still present. My white blood cells were collapsed so it was best not to go out too much!
The 3rd week of treatment was much better, I could resume activities, really leave the house. I took the opportunity to go down to the Landes to visit my sister by the sea :)
I had mucositis during almost all of my treatments. It was really very unpleasant. For me fungizone worked for a while then I switched to Mycostatin.
2/ hospital: (e.g. contact with nurses / doc / caregivers):
A big thank you to the entire department but particularly to the nurses who were really present and answered all my questions.
The oncoesthetician who worked at the hospital was also wonderful. I saw her every Monday during my chemos. It was my little moment of escape, relaxation. We talked a lot, about lots of little beauty tips but also about how others looked at me, about how I was experiencing chemo.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
I was looking at photos of vacations or good times spent with my loved ones :)
I told myself that each step, each chemo was a step closer to recovery!
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
To protect against UV rays, La Roche Posay silicon varnishes are super pretty too :) (see Feet & Hands Kit here)
Castor oil on the hair of the head (see Hair & Eyebrow Kit here)
Massage scars with sweet almond oil and karate butter (see Face & Body Kit here)
La Roche Posay moisturizing body cream. I had a lot of spots on my stomach and back, hydration made them less visible.
Before I hardly wore any makeup. Now I wear BB cream and blush to look good!
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
Leggings, a wide t-shirt that's a little low-cut so it's practical to wear in the bedroom, a bra and a big sweater!
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
During chemo I couldn't do much. I had trouble concentrating. I watched a lot of series and films :) I did origami, time-consuming activities to make time pass quickly and think about something else!
When I wasn't feeling too good or in pain, I would lie down and concentrate on my breathing while thinking about what I was going to do next.
I then wrote in a notebook all these small things or big projects that I wanted to carry out once this ordeal was over.
Since I stopped chemo I have been cycling for 30 minutes every day and I have started reading again! I'm trying to organize the rest to realize all the dream projects written in my notebook :)
4/ hair problem (eg: did you wear a wig, scarves, hats)
Before losing my hair, I told myself that I wouldn't buy a wig, that it would look fake, that it wouldn't be me. Finally when my hair fell out I bought one from Elite (a brown bob, a little darker than my natural hair).
I wear it very little. I find that there is too much volume and I don't feel too comfortable with it but it feels good to have one, it reassures me. Rarely but some days I want to have hair!
I often wear a hat at home because my head is cold!
To go out I wear a scarf! But I like my head without hair, I've gotten used to it. If it were up to me I would go out into the street with nothing but I'm afraid of the looks of strangers!
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
I was worried that those close to me and those less close to me would feel sorry for me and change their behavior because of it, that I would be seen as sick and not the person I am.
When I found out I had a K, I couldn't pronounce the word or write it. Recognizing that I had a k was recognizing that I was sick and having to accept the look of complacency or pity from others. I just said I was going to do chemo and downplayed everything around it. I avoided seeing friends when I was really bad. I didn't want my loved ones to see me in this situation and keep this image in mind.
After my first treatment, I realized what was happening to me. I think the trigger was hair loss. I then took everything with derision. I hate people who dramatize! When I see that people close to me are uncomfortable I talk about it myself and make little jokes about the situation, it immediately lightens the atmosphere!
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
“But you don’t actually have real cancer, you only have a little chemo, it’s just preventative.”
When it had been a month since I started chemo: “But then they did more analyzes on the cells in your tumor, what illness do you have?”
How did your loved ones support you?
My sisters and my mother have been incredibly supportive. I didn't fight this K alone!! We all fought it together! They took turns accompanying me to the chemo sessions.
My friends and the rest of my family were also very present. With packages, letters, messages, calls,...
At the start of my second treatment, my sisters showed me a video montage with messages, dances, photos of support from all my loved ones!! It's the kind of attention that gives strength for an entire treatment and reminds us who we're fighting for :)
And what advice could you give to loved ones who accompany a K fighter?
Always make the k fighter understand that we are there for him, even if he acts as if everything is fine.
Never ask if “Are you okay?” during chemo but rather "how is your day going? how are you feeling?"
That we can continue to tell the K fighter about our little problems and ailments!
That you have to stop talking about your best friend's grandmother whose aunt had cancer and who ultimately...didn't make it! Every cancer is unique!
Do you find out about K on the internet?
Yes but only on the side effects for the skin, hair...
If so, does it make you feel good?
Following the daily lives of other fighters or ex-combatants boosts morale :)
If so, what would be the useful (internet) links that helped you during K?
The Mister K fighting blog :)
Instagram account of @nalieagustin , @feminityandjy , @lilisohn
What has the K changed in your life...?
I lost part of my carefree attitude but ultimately I tell myself that it made me grow! A little too quickly, probably, but it made me realize a lot of things.
I realized how much amazing and present family and friends I have, who will always be there to support me.
I know myself better, even though I had incredible support I spent a lot of time alone (because I needed it) and that helped me to know myself better and know where I wanted to go! I have philosophized quite a bit about essence and existence ^_^
My relationship with time has evolved a lot.
On the one hand I tell myself that I'm only 23 years old. Everything is still possible in my life. As if I had been given a second chance and I had to take full advantage of it! I'm more afraid of failure. I'm no longer afraid of taking on projects and making choices that aren't very prudent or rational! Have dreams and believe in them! I'm going to do everything I can to go work in Brazil and travel ;) I don't want to be reasonable! I don't know what my future will hold, I may be sterile and could never take out a mortgage so I'm not going to work to "secure my future"! Permanent contract and homeownership are not really my priorities at the moment! I realized that being young and healthy is something incredible!!
And by measuring how lucky we are to be there, by telling ourselves that it doesn't matter much, we tell ourselves that we must take advantage of all the moments, live in the moment. I became super impatient! I don't have time to wait anymore. If I want to do something today then I have to do it!
I hope that this experience will also have made those close to me aware of all this!
Free field ;)
tell us what you want (which might not be in my questions):
I have a lot of questions about the causes of this disease.
I'm trying to understand: environmental factors, pills, diet,... Unfortunately I find few answers, few studies have been done on ovarian cancer in young women and even less on immature teratomas!
So if you have documentation I'm interested!
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Thank you Marie, such a precious and sincere testimony.
You can leave comments below.
If like her, you want to tell your story, your projects and share your tips, go here , send me your questionnaire and 1 photo of yourself so that I can draw you ;) to: interview@mister-k-fighting-kit.com
*Many of you send me your testimonies, thank you for your precious trust, for this same reason, the broadcasts of your interviews will sometimes be broadcast in several months, but know that I keep and transmit absolutely ALL the testimonies that are sent to me , Thank you for understanding.
Please note that I do not retouch any Interview, they are completely free, it is your freedom, your story, I just add my personal touch with the illustration, they are delivered as they were sent to me ;)
NEVER GIVE UP!!
Charlotte
