ITW n°65: Severine - K fighter.
Hello,
today Severine, 37 years old, full of beautiful boosting waves made in the USA, living in New York (oh yeah) "borderline hyperactive" tells us her fight against her Breast K from which she has been recovering since January ;), to make a assessment and give you advice!
Great discovery.
Let's get started:
Who are you ?
First name: Séverine
Age: 37 years old
Profession: Director of marketing studies
Where do you live: New York
Why do you agree to share your story today?
To take stock of my 8 months of treatment, share my experience and my advice.
What are your qualities (in a few words)?
smiling, positive, dynamic (borderline hyperactive)
What are your passions (in a few words)?
travel, meeting people from all walks of life, and for several years sport and more particularly running
What K (what cancer - grade if you wish / stage ditto):
Breast cancer, triple negative (an aggressive cancer which represents only 15% of breast cancers, not dependent on hormones), stage borderline between 2 and 3, re-evaluated at stage 2 after surgery (but chemo before surgery had reduces the size of the tumor)
When was it discovered? How old were you ?
End of May 2015, two weeks after running my first half-marathon, at the age of 36 (I have never been told so much that I was young as during the last 10 months)
Under what circumstances was it discovered?
I ran a lot in preparation for the half marathon and often wore sports bras, which is how I discovered a lump in my right breast. Two days after my race, I saw my gynecologist to have the lump examined. The same day she sent me for an ultrasound (mammography on young women does not necessarily give conclusive results because of the density of the breasts), which confirmed the presence of a lump but which did not seem to worry any more than that. the radiologist given my age, but only a biopsy would confirm it. A few days after the biopsy I called my gynecologist back who was waiting for Monday to give me the news and not spoil the weekend. When she said to me “Hi sweetie, where are you?” Can you come and see me? », I understood… 5 years after giving birth to my 2nd child, the news she had to tell me was much less good.
If you are currently undergoing treatment, or in remission (for how long?)
I finished the treatments at the end of January 2016, 5 months ago.
Can you summarize your (K fighter) story for us ?
The surgeon who first saw us told us 8 months of treatment and she was not wrong. I had the total: chemotherapy for 3 and a half months, then surgery and 5 weeks of radiation. The reconstruction phase is not yet finished but it is continuing its course and within 6-8 months we will get closer to the goal.
What treatment did you have?
chemo:
4 sessions of Doxorubicin (Adriamycin) and cyclophosphamide (AC) once every 15 days. The first is the big red syringe.
Then 4 sessions of Taxol at the same frequency to spare my veins, instead of once a week for 12 weeks but suddenly I had 3 doses instead of one each time.
radiotherapy:
The 'insurance' phase, as my radiotherapist said, to kill anything that could have escaped chemo and surgery, 25 sessions, every day for 5 weeks with the first a few days before Christmas.
operation :
Double mastectomy (like Angelina Jolie) with lymph node dissection (3 out of 15 were cancerous). A night in the hospital (we're in the US!) but in a VIP room J
other:
I had immediate reconstruction with temporary implants that were gradually inflated each week after surgery. They will be replaced by permanent implants (well to be changed every 10-15 years) 6-8 months after the end of the rays, i.e. in the fall, and I could even have reconstructed and tattooed nipples a few months later.
What tips directly related to K do you want to share?
(your feeling with the doctor, your good treatment organization plans, anything that seems useful to you ;))?
1/ chemo: (ex: your tips, the helmet, your affinities with nurses):
I didn't try the refrigerated helmet which seemed very complicated to me when I saw the ones that came with all their equipment. I was just planning on some very intellectual reading (=people magazine), something to drink and a light snack (fruit, nuts, etc.).
How did you live the day before, the same day, the days after chemo?
and what were your tips?
The day of chemo my anxiety was always knowing if my levels were good to have the session. My great hospital (number 1 in the US for cancer treatment) is super modern and I have an app on my phone with all my results, my appointments... I received the results of my blood test within 30 minutes and I had time to analyze my levels before seeing my oncologist (and therefore sometimes to stress, to harass my nurse friend to refine my analysis…).
For the first 4 sessions, the infusion (I don't know if we call it that in French) was quite quick, around 2 hours I think. It went by really quickly. My great nurse friend accompanied me twice (my husband was there for the others). It was nice to be with her to act like a cosette and understand what we're doing to you.
For the taxol sessions, it was LONG! Taxol can cause serious allergic reactions (but rare) so we give you the medicine slowly after having shot you with a large dose of anti-allergic drugs (dose which was even doubled for me later) + the fact that I had 3 doses, it lasted over 4 hours! Doctors and nurses told me that this chemo would be a piece of cake compared to the first but in fact it was the one that left me with the worst memories. I never had nausea or vomiting for either of them but the taxol gave me neuropathy (itchy feet) and attack my nails. From the second session onwards, my hands and feet were put in bags full of ice cubes to avoid these side effects. The next day I was generally unwell and often felt dizzy. I once collapsed in the store across the street from my house and found myself sitting in a beach chair (the only chair they could find for me to sit on). Afterwards I was careful two days after taxol.
In my luxury hospital, I had a mini single room with a TV for each session. The chemo nurses were great and very knowledgeable. For my last session, I brought them mini-cupcakes and we did a photo shoot with my favorite.
My company had organized a meal delivery system for the whole family on the evening of chemo, offered by my company or my colleagues. It was really nice and the children liked having a different delivery each time (Japanese, Thai, Italian, etc.).
2/ hospital: (e.g. contact with nurses / doc / caregivers):
I was only hospitalized one night after the operation. It's quite expeditious in the US. You leave with your drains (4 for me) which you are taught to empty at the hospital. A physiotherapist will come and show you the exercises to recover your motor skills that you will have to do on your own. But the hospital staff were great. I also really liked my team of department technicians who I saw for 5 weeks every day of the week. We become attached to this little world because they are part of your daily life for months.
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
I wanted to try reiki but I never found the time (I always continued to work full time apart from my 4 week break after the operation). I continued yoga (and some meditation) as much as possible. My mother went to see a “toucher” as we call it at home who sent me good vibes to avoid burns during the rays. I don't really believe it and even though my skin held up pretty well, I suffered a sunburn after 25 sessions.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
Sports whenever I could. I went to my radiation sessions on foot across Central Park (3 km) or even by running. I also always continued to work except for 4 weeks after the operation. We also went on vacation twice for a week between 2 chemo sessions in the countryside.
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
The body and especially the mouth dries out with treatments. For the lips, it was the Nuxe lip balm that saved me. I took care to protect myself from the sun with 60% cream from La Roche-Posay. For the nails (especially during taxol chemo), I covered them with a dark varnish. At the start of chemo, I took part in a 'Look good feel better' workshop in my hospital. I was taught how to put on makeup, draw eyebrows or eyelashes and was given a kit with lots of products. I threw away all my makeup that was older than 6 months or a year to avoid infections during chemo. I use almost only natural products like Couleur Caramel's organic enhancing pearls for foundation. I, who almost never wore makeup, had to change my habits to make myself look good.
Biafine (imported from France) was my great friend during the shelves. I continue to cream my body every day but with nicer products from Nuxe or Caudalie.
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
Apart from after the operation when I had to dress in shirts to manage my drains (and also because I couldn't lift my arms), I didn't change my style. I always wear very bright colors (Desigual is my favorite brand). I wore leggings a lot more during treatments because I floated in my pants.
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
I continued to run (or at least walk) as much as possible even if during the heaviest treatments it was 2-3km at a snail's pace. I continued to go to yoga in yoga classes for cancer patients (patients or former patients) or my normal class. I did a little meditation. I completely changed my diet: a lot more fruits and vegetables, preferably organic, turmeric everywhere, a lot of green tea, anti-inflammatory foods... I followed a lot of advice from a book by David Servan- Schreiber, Anticancer, sent to me by my best friend.
To give news, I used a Whatsapp group for my closest friends and I created a private blog to inform others on a regular basis because I didn't always have time to respond to all emails.
4/ hair problem (eg: did you wear a wig, scarves, hats)
The wig didn't tempt me and when I was told that my insurance didn't cover its cost (at least $150 for a good wig) that reassured me in my choice. Plus, in New York it's very hot in the summer. I really like hats so I bought lots of them. My friends from France sent me a great package with lots of scarves, earrings, makeup... In short, a great kit. To go out I generally wore hats because you are less likely to see that you are sick than with scarves and my boys preferred it. My hospital also has a store with suitable scarves or hats. At home, I often wore nothing and my children had gotten used to it.
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
It was especially for my boys that I maintained my appearance so that the illness was not too visible. Apart from the numerous medical appointments, I continued as if nothing had happened, I went to work, to school parties, went out with my friends...
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
A mother of one of my son's classmates who spoke to me with an air of complete disappointment and so sad that I wanted to hand her a tissue.
A neighbor who towards the end of the treatments said to my husband in front of my children something like 'I learned about Séverine, it's terrible...'. My oldest didn't understand the super worried speech when we were reaching the end of the ordeal.
How did your loved ones support you?
Everyone has been great.
My boss and president of my company knew about it before my mother and has been wonderful from the start. She set up this system of meals delivered every evening of chemo, was super flexible with my schedule, sent me very comforting packages or cards. My colleagues were all also very present. A colleague and friend accompanied me to my last chemo. Almost the entire company also participated in a walk/run for breast cancer with me.
My friends have also been a great help whether they are in New York, France or elsewhere. My friends here accompanied me to chemo or certain consultations, or came to prepare a meal for me. A friend who had suffered a relapse of breast cancer 6 months earlier also helped me a lot to anticipate each stage of treatment.
My family came to the rescue several times despite the distance. My parents came towards the end of chemo and helped us get back to school. My in-laws played nurse during the operation. Then they all came back to celebrate the end of year holidays while I was starting the shelves. And my husband of course was the most present, disrupting his schedule to accompany me or manage the children.
And what advice could you give to loved ones who accompany a K fighter?
Support this person well, offer concrete help (meals, childcare, outings to change your mind, etc.) and even do without offering (it is not always easy to accept the help that is offered to you or to dare to ask). Be proactive.
Accompany the person to chemo sessions or important medical appointments, to record information that they will no longer remember or will not have time to digest.
Packages with useful and fun gifts (scarves, cosmetic products, magazines, books, etc.) are great fun. A card, a note, an email regularly.
A Whatsapp group with your closest friends to chat during long waits for medical appointments, provide live news...
Do you find out about K on the internet?
Yes, probably too much. I avoid forums and instead favor institutional sources, scientific data... But also blogs like this one with testimonials.
If so, does it make you feel good?
I like to understand everything so this helps me. The testimonies are also enriching for understanding each step.
If so, what would be the useful (internet) links that helped you during K?
On nutrition I read the blog from http://www.cancerdietitian.com/
Or the site of David Servan-Schreiber http://www.guerir.org/index.htm
Also to relax and laugh about cancer http://tchaogunther.com/
Official sites like breastcancer.org, komen…
What has the K changed in your life...?
(for example: your vision of the world, your priorities, your essentials, refocusing those around you, in your work, your philosophy..?)
I am more zen, I put things into perspective more, I get less angry. Sports and nutrition have become even more important in my life, they are my anti-relapse medications (I can't be on Tamoxifen with triple negative cancer). I've realized the importance of having lots of great friends (and I'm spoiled). And also that of having good health insurance when you live in the United States.
Free field ;)
tell us what you want (which might not be in my questions):
I think I'm growing out of it. I learned a lot about myself, my body and my mind. I made great progress in medical English in record time J
I would like research to progress more quickly on triple negative cancers, the risks of relapse and metastases. In the meantime, we will have to learn to live with this unknown future and continue to enjoy every moment.
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Many thanks Séverine for your testimony full of good vibes.
If like Séverine you want to tell your story 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
