waiting for the tamarind to be ripe

When I was young in El Salvador we lived in the hills of the volcano of San Salvador, and my mother's pride was her garden which was full of roses, fruit trees and then luxurious greens and she had all sorts of exotic trees and plants...as children this garden was a whole new universe, wild and full of adventures and also food...One of my biggest treats was to walk quite far into that jungle and down a steep hill to reach what I thought was a tamarind tree, I thought it was from japan or india I cannot remember but it was not the tamarind we all know. To be able to reap the delicious fruit one thing was required: to be VERY patient!!!! the fruit could only be picked when the skin was fully brown and how many times did I pick it not ready yet to regret bitterly that I had ruined a whole fruit (as they were not that many per season). But when you picked the fruit just right then it was just pure heaven.

Many years later I am just as impatient as I was as a child, have I not learnt anything? It is one of my biggest faults.

So wednesday and friday I had news from Prof Haanen that my TILS are growing well but they are not ready YET (normally TILS take like 4-5 weks to grow but this protocol has a faster procedure of growth that lasts about 14 days)...so we need to wait until tuesday to be CERTAIN that there will be enough TILs for the transplant and thus for me to go through the next steps (meaning the leukapheresis and young cell collection that will feed the TILS next week).

So we wait...and hopefully the chocolate indulgence that will take place tomorrow around here because of easter will distract me some.

Paul and the Dragon, explaining cancer to children

Thank you  Hein for finding this dutch treasure.....a wonderful film to explain cancer to children

http://vimeo.com/anikey/paulandthedragon

unTIL the TILS grow and the dutch surgeons

Alex and I just came back from Amsterdam, and though the cat pissed everywhere and it stinks I really love being back home....

So: the surgery for harvesting the TILS went really well. Alex came with me which made the whole thing less "medical", his dry sense of humor and purpose of getting good food even before surgery, made sure we remembered that it is not ALL about cancer...he even wanted to drag me to a museum after surgery but I told him it would be a bit much :)

As planned thursday at 7am, I finally got the see the 4B ward at NKI where I will be lodging during the TIL treatment. The surgical team I had that day was awesome, not to mention I had too young surgeons that looked straight out of a calvin klein underwear catalogue, I mean seriously....how can one be operated in those conditions?

Ok, so they were fully dressed....the female nurses were also very pretty and they were all there holding my hands and being all nice, so I felt somehow I was at least in "very good looking" hands.

Then a more rational part of me woke up and I told them my surgeon was watching them....so they better not mess up too much with his Frankenstein work (yes I have had about 20 tumors removed in 5 years so I am a surgical piece of art)!!!!

 
Then they all gathered around me and explained in lengthy detail what they would do while I was being nicely drugged and I just was laughing at the situation while I pictured Hawaii. I woke up feeling great in a wonderful recovery full of windows and sunlight, I was full of energy as every time I come out (this must be some sort of like "ok, once again I survived general anesthesia!" highs).

I was brought back to my room and immediately shown the huge 10-12cm scar - with no bandages! yes this is the cultural specialty all glue no bandages - and told I should stay the night to make sure I recovered fine...I was not prepared for this but Alex was happy to go back "window drooling" while I became better acquainted with the ward, the room, the nurses, the small cafeteria for patients and I guess just the whole cultural differences of patient/carer relations. I actually REALLY like the dutch....

So I had calvin klein model surgeon show up later on and most importanly Prof Haanen who told me he had looked at the CT scan I had just done on tuesday and that though there are progression sites growing it all is "ok", whatever that means I do not really want to know more at this stage. He just really emphasized now the TILS must grow. He reminded me for now they have 100% success rate growing the TILS, that the lab had received my tumor (tennis size ball no less) in very good condition and that within a week to 10 days we would really know for sure if all goes according to plan. The suspense is I guess part of the treatment...so we all now wait and send good vibes to the TILS. If all goes well we will go back for leucapheresis april 4th to collect food for the TILS from my blood.

Alex and I are thinking of taking the kids up to Amsterdam then to show them around a bit and start "desensitizing" them for the whole thing.

I am really tired but do not want to sign off without saying that the fundraising is going extremely well and that we want to thank everyone who continues supporting us also with catsitting, babysitting, texting love, my resseguier work life support, colleagues voting for my final entry as a ULB official "titulaire", people sending me lovely cards and emails and just all the boundless unconditional love!!!! and last but not least the delicious bears from bern, we just LOVED them!!!!!! thank you thank you thank you.....

I like green

Today I had brain MRI, blood tests (tons) and anesthesis plus a good interview with Nurse "Hank", super nice guy who told me all the glorious details of the TIL...

Now, the first good news is that the MRI is clean! without this the trip would have stopped here...for the rest:

-Surgery of tumors next thursday the 21st
-leukapheresis the thursday after the 28th
-a ton of exams I have to complete (CT scan, chest X rays, heart blah, blah blah)
-first chemo for 2 days starts April 15th,  then second chemo for 5 days
-TIL transplant the 22nd or 23rd;
-first dose of IL2 4 hours after TIL then every 8 hours...bringing me to be in the hospital well into may 4th...(so yes my birthday april 28th will be in hospital)

Now this is chinese to most of you but for me it felt like going to the travel agent and finally getting a clear picture of what each day will be filled with, what side effects to expect, what drugs they will give me, what is likely to happen if thing go well/not well, etc...

It seems that visits might not be such a good idea given that my immune system will be down to zero level and only start rising a week or so after IL2, so there goes that...seems I will be very tired, mostly resting and recovering from each "trip" (yes apparently one of the side effects of IL2 could be hallucinations) so yes, do not google IL2 blogs too much if you do not want to freak out.

But me, I was doing a happy dance almost jumped at the nurse when he told me the MRI was ok and that we could move forth.

Prof Haanen did say that now we want the harvested TILS to grow LOTS, so next week you have to work hard sending your good vibes, prayers, reiki, thoughts etc to my TIL cells in the NKI lab and believe through some sort of quantum physics and all your love that they will grow well into 200 billion cells would be ideal...

So I leave you exhausted but happy....we will get to run the experiment!!!!!

Below a melanoma cell surrounded by healthy cells, and THAT is why I like green,

gratitute from a 6 year old and love from a 12 year old

Aurélien's understanding of fundraising

Hadrien's understanding of love

Prof Haanen thinks I might have a slot to see the anesthesiologist, do blood work and brain MRI (which needs to be clean for me to get in) on thursday and he hopes surgeon can take tumor out friday morning. Then within a week we know if TILS are growing. I must confess the amount of stress now is really high and there seems to be little more that can be "done" so I keep on telling myself I might aswell continue on being here. The major fear we have is that the disease progresses too fast to allow me to start the trial as after surgery we still have a leucapheresis and the 2-3 weeks it will take for the TILS to grow. My children see right through me. As they hear us talking about the incredible amount of support we are getting they also wanted to say thank you in the best way they can. Aurélien who was worried about us not being able to afford the treatment, and as the fundraising continues to go well I assure him this will not be a problem. Hadrien is like us learning about a different definition of "love", this is the big connection love, the big link love, the love from even those who do not know us love....all in all we are just filled with incredible gratitude and feel humbled by the experience.

Hokusai says

Prof. Haanen says they might have a spot in surgery for me next week! I am now sitting in a not so easy place as I can feel the tumors growing and some are a little bit painful or enough so that I know they are active. I stopped taking Zelboraf 2 days ago and worry that the progression will go faster this time. Lots of administrative stuff that is negative going on among others the official refusal of my health insurance with one sentence

"the treatment you request is new (no? really????) and does not give us sufficient guaranties (oh right because in cancer treatments and especially melanoma we have 100% success rate with treatments) that there will be an enhancement on your health"

I wonder if the Drs that work for health insurances have a booklet of phrases they can drop on refusal letters or automatic letters just ready to click and refuse.

Anger, much anger and that.

I guess I recognize fear of what is ahead but also terror of what is happening right now, the tumor growths,  but I also recognize so many other things too...air on my skin, light, smile of a friend, the voice of a colleague, the noise of the birds and the cars outside, living...because this is IT.

So I want to share the poem that Claude Maskens sent me as a gift just in time! I am learning to let life take me by the hand, life to live through me....

one look at the grass on campus last summer....

Hokasai says

Hokusai says look carefully.
He says pay attention, notice.
He says keep looking, stay curious.
He says there is no end to seeing

He says look forward to getting old.
He says keep changing,
you just get more who you really are.
He says get stuck, accept it, repeat
yourself as long as it is interesting.

He says keep doing what you love.

He says keep praying.

He says every one of us is a child,
every one of us is ancient
every one of us has a body.
He says every one of us is frightened.
He says every one of us has to find
a way to live with fear.

He says everything is alive --
shells, buildings, people, fish,
mountains, trees, wood is alive.
Water is alive.

Everything has its own life.

Everything lives inside us.

He says live with the world inside you.

He says it doesn't matter ifyou draw,
or write books. It doesn't matter
ifyou saw wood, or catch fish.
It doesn't matter if you sit at home
and stare at the ants on your veranda
or the shadows of the trees
and grasses in your garden.
It matters that you care.

It matters that you feel.

It matters that you notice.

It matters that life lives through you.

Contentment is life living through you.
Joy is life living through you.
Satisfaction and strength
is life living through you.

He says don't be afraid.
Don't be afraid.

Love, feel, let life take you by the hand.

Let life live through you.
- Roger Keyes

Music to my virtual ears!

The email that I had been waiting for has arrived from Prof Haanen and sang in my virtual ears:

"Yesterday I received the official approval to continue with the TIL pilot study. We are looking into the the surgery date."

at last we can get started!!!!!

I also want to thank again and again all the donations and all messages of support we receive daily - everyone is out there in the net helping in very many different ways (not just through the fundraising) holding us and making us feel that WE can do this together that it will be ok, for me, for Alex and the kids, this love is priceless. We are being held.

burgeon, branches and the macadamia tree

As I arrived at university this morning after dropping the kids at school the sun was shining at last in Brussels and I allowed myself to see the trees that are burgeoning now really fast...I had to stop and take a picture though the trees are quite tall you can see the burgeons from below. 

I continue to receive so many emails and all sorts of expressions of support for the upcoming TIL treatment at NKI that at that instant I realized: I am just like "the potential" of that burgeon, and I had to then allow myself to notice how it was part of a branch and the branch part of a tree and so on...So I kind of feel like a burgeon today and see all the little branches and stuff? That is all of you!!!!

It also reminded me of a recent lucid dream I had where my body was growing into a tree and the tree was blooming (no I had not had a "herbal" special tea or brownie or anything!), it was just one of those awesome moments where I allow the unconscious to play...I guess it was stimulated by a recent discussion I had with Eddie during his recent visit about how when I die I want to be cremated but that I had no idea about what then my family would do with the ashes.... Both my kids - who after 5 years with my cancer do talk about death and dying with me - have told me that if I come to die they want each a little urn and that I should give one to Alex too. Now, I am sure Alex does not want an urn on the chimney with a huge picture of me with darting eyes watching over him....so I saw that in fact now we can put the ashes into a pot so that they can nourish a tree. Yes, you should know that you get to choose what tree your ashes could nourrish! http://idsa.org/poetree 

So I half jokingly told my brother that maybe I would like my ashes to nourish a macadamia tree because when I was born in El Salvador my mother planted a macadamia tree to celebrate my birth. Eddie and I were crying by then, this often happens when you get into those "black sense of humor" moments and he said, “hey did you know macadamia is an Australian tree?” – no, I did not...look at this it was even first found next to Brisbane where my family lives:

The seed was first described by Europeans south of Brisbane in 1828 by the explorer and botanist Alan Cunningham. One of the locations where wild macadamia trees were originally found was at Mount Bauple near Maryborough in southeast Queensland, Australia



The burgeon, the branches, the tree, the earth, the ashes : Today I could see ALL OF IT.  Each day I think about life and death and the difference between "being alive" and "living". 

BUT today it is the potential of the burgeon that sticks to my mind the most…because right now with all the supporting branches around me I feel like the burgeon right now, ready to bloom, start yet another season. 

I do not see myself "fighting to remain alive the longest"....I just desire to to continue LIVING each second to the fullest.

And if I get through TIL, it might still be the right moment to plant a macadamia tree somewhere....