I have a healing room inside me: thank you Mama

Thank you Mama, because you always allowed me to find my own path to spirituality and never imposed dogma or theories, this has allowed me indeed to find the universe inside me and you are always there holding me....

I love you boundless

she sends me this song today after she cut her hair short (Sinead length) in solidarity

I have no "religion" so these words fully describes how it is for me, exactly the universe inside me.

Sinead O'Connor, The Healing Room


I have a universe inside me
Where I can go and spirit guides me
There I can ask oh any question
I get the answers if I listen
I have a healing room inside me
The loving healers there they feed me
They make me happy with their laughter
They kiss and tell me I'm their daughter
I'm their daughter
They say
You have a little voice inside you
It doesn't matter who you think you may be
You're not free if you don't know me
If you don't know me
See I'm not the lie that lives outside you
And it doesn't matter what
You think you believe
You're not free if you don't know me
If you don't know me
See I am the universe inside you
You come to me and I will guide you
And make you happy with laughter
I joy in seeing you're my daughter
You're my daughter
So believe you're not free if
you don't know me
If you don't know me
If you don't know me
If you don't know me
If you don't know me
If you don't know me


p.s: Today fine but tired....may have uveitis which can be treated with drops will see eye specialist wed (all related to treatment). I also have lots of vitiligo so I was in a "photo shoot" fully naked but not in sexy poses. Otherwise Prof Haanen confirms mu tumors are "melting".....and he looks extremely happy.

:)

birthday present

My lovely friend Ilios Kotsou came to visit with hair and he left without, thank you for this birthday present and the chocolate cake!!!!

My 43rd bliss-day...

This is my birthday, I slept well to the point I forgot I was sleeping here, had lots of dreams and the nurses given me "the queen" treatment, a nice morning shave, and decorated my room!!! I am in bliss. They all insist I have a nice head and I believe them for today....

Thank you all holding me in your thoughts, prayers, love, candles....I am in pure bliss today very grateful I am not alone,

Patricia

Love can also be declared through hair...a true "renaissance"

My long time buddy and godfather of Aurélien, Erwan Bellard cut his long hair after 23 years for the first time in solidarity for my loss!!! I can only imagine how his partner Virginie and his 3 girls are thinking...

Je t'aime aussi mon cher...

I think he looks hot, I will be positing mine as soon as I get a haidresser to shave my hair which is falling bad now.

I will be 43 tomorrow...and I found this photo where I was blowing my 18th candles in Australia, it was my first birthday there.

I had such long and wavy hair...sigh, I am glad I am only losing my horrible short zelboraf permanent hair

SO....TIL and IL2 are as bad as they say....

I am finally emerging from a dark tunnel, chemo as I said was bearable I think I will shave my head tomorrow...My dear friend Erwan already shaved his in solidarity and he looks really hot, I am not sure I will.

I wish I could tell you that it was "not as hard" as they say blah blah blah, but this is the hardest thing I have ever been through in my whole life including natural childbirth and a peritonitis. NOTHING prepared me to the reception of the TIL infusion, those innocent little milky cells arrived and I even had a banner welcoming them back home, I was very excited and so was Prof Haanen and all those around, in the end the cells given were 150 B which even though did not beat Hein's record BUT I was told was just as wonderful. 2 criteria were good in my cells a) fast growing b) big number 150B

Haanen was very smily!

BUT within 30 minutes I was going through a rollercoaster of non-stopable chills that became shaking, vomiting, high fever and just pure hell...this took a while to manage, cannot remember maybe 3-4 hours? because of the strong reaction we started the first IL2 a bit later than the normal 4 hours. Brigitte Maskens was holding me through all this - poor thing, it must have been scary. So the first IL2 comes and I just go into severe chills and rigors until I finally get enough demerol (pain killer) to calm me down, I ache everywhere and take another long time to recover.  I mean you do not really get recovery time but you try, eating or drinking were completely out of the question for me. I had severe bouts of nausea (again poor Brigitte dealing with all this). The nurses and staff were very attentive but no matter what you feel like shit.

The next round was "a bit" better but not really by the third - I convinced the nurses to give me the demerol 15m as soon as the IL2 was in and this totally changed things as I did not get the chills!!!! this made a huge difference. But by the 4th IL2 they had changed an antibiotic because they had found some streph in my blood and this antibiotic gave me severe allergic reaction plus I was getting the broken capillary syndrome from the IL2 so I stood ground and said no more IL2 I stop here. Haanen tried to coy me into another round but by thursday he agreed with me....so I though it was going to be be uphill but the allergic reaction and severe nausea just took over basically I slept 23/24 hours since thursday and when I sat up I vomited and my whole body and face looked like I was a zoombie with capillaries broken etc "horrible". This is not how I envisaged my B - day tomorrow, I am only since the last hours feeling better so since I have received many messages I am posting on the blogg, sorry I cannot reply to individual mails nor phone call I simply do not have the energy. The Dr this morning changed the antibiotic and gave me a pill to start loosing the 5 kilos of extra water I carried so I guess this is related. Tomorrow I will be better. By monday I will post a more cheerful mail!

Thanks to all your messages!!!!!

P

These Cells are on Fire!

Ok, ok, so it is the third post from me but it is worth it:

Haanen just dropped by saying that my cells have grown so much that they have TOO MUCH, that they have never in the study seen cells that are growing this much, so they will be too much and they might actually freeze some for if I ever need them.

What kind of wonderful news is that huh? He would not even give me a number but Hein he said he was pretty sure I bet your record easy ;)

I am on fire too!!!!!!! and this is thanks to all your vibes, megavibes, prayers, reiki, shaman trips and love and the whole thing, we are all on fire.

Notice how Alicia Keys's photo has "hope" on the wall?

http://www.youtube.com/watch?v=J91ti_MpdHA

Chemo in Amsterdam, I like green but no party for me here!

1) chemo days 1 and 2 over, cytoblablahstine...or something like that (nausea, heart arythmia and tired like a train hit me)
2) chemo days 3 and 4 done and then 3 more to go before the TILS (this seems nicer chemo, still gives me nausea and will lead to my total hair loss, at this stage I really have not had time to worry about looking like a roll-on deodorant and wonder if I pull through how I will look in front of first year students when I teach this fall)

Chemo EVEN in amsterdam is NOT a party....but overall it is "ok" so far. Really I have asked about the medical marijane and I only get a little smile saying we deal with nausea fine for now and only once have they had to use it in all history of the ward, really????...so, the party is really not happening just because I am in the land of the green fairies.

I have a hard time sleeping, getting bored, and too tired to read or watch movies but mostly you just do not move much, nor eat much and feel like chemo brain mashed potatoes.

But there is beauty around me, a little orchid and lots of photos from the kids and their art work.

So far so good 3 more days....and then the TIL and the IL2 rollecoaster starting tuesday and then recovery week.

Patricia's Melanoma Legacy in Oz

Confronted with the NKI trial costs my family and friends in Australia decided to create Patricia's Melanoma Legacy - a charity to support me and patients like me who are fighting for access to clinical trials.

Their first event was launched april 13th - in true Latin Tradition it was a delicious dinner and a show with many known local Latin artists and bands. The MC was by my big brother Atilio, who is king at these events....I think my other brother Eddie took the photos.

We were are all just blown away by the incredible wave of solidarity, generosity, passion, help and just pure love that people showed for the event. Over 300 people were there, among them about 50 musicians and dancers, cooks and organizers who gave their art and time without boundaries. If you have a facebook account you can visit and see some of the photos of the evening which was a success!

Here a few I picked, a lovely dancing queen...

and tango dancers...

to see the other artists you can go here

https://www.facebook.com/pages/Patricias-Melanoma-Legacy/363103860469633?fref=ts

thank you life

These past 2 weeks have been "interesting" to say the least.

One of my best friends in Australia had serious brain surgery and pulled through (with hearing loss and facial muscle damage) but she is alive and kicking and holding her 2 little ones close to her....another dear friend in Switzerland had to go through the horror of having her 10 year old fall through the first floor window while she was on a play date (3.5m high!) and she survived with just a wrist fracture. Another dear friend in Belgium sadly lost her father to a heart attack, he was one of the first persons who supported the fundraise for my treatment. I never got to meet him.

Thank you life for reminding me that we are just a small thread in the tapestry.

You should know that ONLY thanks to hundreds of donations from friends, family and complete strangers we were able to make the first financial deposit to the hospital that allowed us to get the treatment started. This past weekend over 300 people gathered in a full on latin party to raise funds (all organized by family and family friends), everyone gave, their time, the food, the musicians, every single detail of the party...the theme "butterflies", which has very special meaning to me and my mother.

Thank you life for allowing me to experience different dimensions of generosity. Generosity is not just the act of giving....or receiving, but of how and why you give and allowing yourself to receive and so on...

After the leuka we drove down to Switzerland to have a week off. The kids were ready and then pampered by their godfather/godmother, but Alex and I were just so exhausted that we were just "off" and thus our initial impetus of finding a nice place near the lake or even drive down somewhere warmer to be childless was easily blown by the wind. We were lucky that we fell into the hands of fantastic friends who very gently and slowly convinced us to stay one night, then maybe stay for lunch and another night and so went the week...I was actually having my first lesson dealing with neuropathic pain so I am so glad both of these friends are MDs...Their warmth, food, loving care and just presence filled us with what we needed right at that moment.

So on confirmation of my oncologist I started new meds on tuesday that made me real dopey (LYRICA anyone?) but allowed me to feel normal by thursday - but I went through dark clouds as the pain was really intense and the tumors are growing pressing on nerves.

What a humbling experience when I think of my dear friend Quentin Van Daele who became a master of living life with pain often as a visitor who tended to overstay. Yet he would always tell me to remember that it was worth it, as each day had a gift, a lesson, and as long as he could "relate" it was fully worth it. He left this earthly world now but his presence and essence are with me fully.

Thank you Quentin. I am still learning from you.

Now I sit at the NKI hospital ward 4B, I can see the sun still though it is almost 8pm, and the sky and clouds and some birds...I can hear the wind, but sadly see no greens apart from the paint color of the buildings. Chemo day one started this morning without any fuss, very smoothly and efficiently I came into my room unpacked and got the needle in place by a great nurse. I was visited by a whole court of nurses, Drs, etc and had the luxury of having my dear friend Brigitte Maskens with me to hold me centered doing the Resseguier method. WHAT A GIFT!!!! Let me tell you I am no wooz but right after the chemo I felt like a truck hit me for about a hour, then a bit drowsy and typing this has taken a bit longer than normal but I am ok! You wonder too how much "chemistry" can go into your body (taking 4 different antibiotics, 2 pain pills, stomach protector, etc) so there goes day 1....

Thank you life for another day fully lived and for all of you who lived it with me.

time is psychological above all, blue and red tones in amsterdam

The last 48 hours felt endless for me, and painful as I had to do 2 days of leukapheresis as opposed to one. Yep, thursday I was meant to be "hooked" to the machine for 4 hours and that became a 6 hours endless this is not going to work kind of day. Long story short: the radiologist could not find the vein in leg so he tried the other and once that was in (a huge needle) that only worked for 2 hours.....so we were only able to collect half of the plasma required on Thursday.

So today we did a whole new 4 hour leukapheresis through the arms (you need a "in" and out" as you are connected to the machine that takes the lymphocytes from the blood) and that went smoothly! so today at 15:33 I am done with that. I am now eating a nice cake and having tea while I wait for the chevalier boys to get back so that I can squeeze them to death with kisses.

The cells were counted on tuesday were at 125 billion and growing, so the number should increase ("maybe" I shall beat your record Hein...) now they will go through the rapid expansion procedure and be feed the plasma for the next 2 weeks. I start Chemo the 15th and expect the transplant of TILs the 22nd or 23rd.

On another happier note, Alex and the boys have visited a ton of museums and walked around a LOT, the hospital was rather a non-event and they just commented that the cafeteria was expensive....

So, what shall my young children remember of this whole trip to Amsterdam you may wonder?????

1) the "blue" mayonaise they got with their Burger and fries at the Nemo museum

and

2) what, why and when the red light district and prostitution exists....so I might ask their school to have a go at that one!

good news!!!!!! spring is finally here

from Prof Haanen:

"Good news! The cells have grown marvelously well! So we have to schedule the leukapheresis this week."

:)

marvelous, marvelous, marvelous indeed....

spring is finally here for us

enjoying our ride

Still waiting to hear from NKI about whether the growth of my TIL cells will be enough to go forth, they will know "later this afternoon".... arghhhhhhh

lucky me, my friend Ilios left a little book for me to read yesterday:

"We know the train carries all loads, so after getting on it why should we carry our small luggage on our head to discomfort, instead of putting in down on the train and feeling at ease?"

Who Am I? The teachings of Bhagavan Sri Ramana Maharshi

so hard to just enjoy the ride of our life.....