The leap

Dear blog readers,

you may already know the news about Patricia, who passed away Tuesday morning July 2^nd officially at 8:27 (I'm Swiss.... therefore time matters, isn't it?) Already one month ago!

Hence the lack of posts and news since her last message posted June 20th. So no gorgeous photo of the ocean or South of France or the mountains with lots of fresh air (re-read her last post)!!! Just a lot of sorrow and pain to share with you

Well, yes.... after more than 5 years fights against the melanoma, and about 4 years as a stage IV patient, she lost the battle. She leapt over to the other side.

Tumors spread so fast, that she eventually died in less than a week. You knew that unfortunately one tumor never answered the TIL treatment in Amsterdam, the one in the psoas muscle for which she had started a radiotherapy (aka tomotherapy). The tumourous cells obviously developed a resistance throughout all the different treatments and at some point overrun her immune system.

On Monday June 24th she learned that she had several small tumors around the liver. I was away, on fieldwork, hardly reachable. In one of her last message to me, she could only say, in French, "merde, merde, merde".

She has been proposed to switch back to the targeted therapy to gain a few more weeks, maybe the whole summer, so we could go all together to Greece, an old, old vacations project....

But she knew dice had been rolled. Still she started again the targeted therapy to give her, and us, this last hope, this extra little more time together.

On Thursday evening she has been admitted to the hospital for severe dehydration due to the continuous nausea she'd experienced because of the tomotherapy. And because of a very strong pain in the abdominal region.

The put her immediately on IV and morphine from that moment on. Blood tests revealed on Friday that she had almost no platelets at all, and probably and infection too. Thus, a big risk of internal hemorrhage. They gave her twice platelets, but with no tangible results, for the vessels within and around the tumors were pumping up all the platelets in a process aka "diffuse coagulation", with the additional risk of pulmonary embolism if any of the clots had the bad idea to travel further up in the vascular system.

Bref, in other words, para hacerlo corto: a bad clinical picture....

And in the meantime, tiredness, confusion, weakness.... kids were with friends (thanks, thanks to all of them), her mother with her, her father going back and forth home-hospital, and my traveling quietly back to Brussels loaded with Greek thyme honey, Chios mastixa and other local foodie stuff to share with her once back in BXL.

Some of you know some of my obsessions, the more social being the food one (I won't share here the other ones, sorry guys, they will be for my psychic), and I was full of hope to recreate some common purslane salad with grilled hazelnuts, fresh goat cheese, arugula, tomatoes and dill, some lemon juice and olive oil (did it recently though)...as some teaser for our next Greek vacations, re-scheduled for August because of her tomotherapy (which was one of the last clash we had about cancer, couple, planning, and all this shit, but...I'll tell you more in another post).

So, yes.... I landed on Saturday, called twice her cell phone without any answer, read quite late a message about her platelets and overall health situation - oh, yes, up to that moment I wasn't worried a bit, for being rehydrated in an hospital is not supposed to be something worrisome - but unable to go out because there were no more keys and the two boys were supposed to come back home in the afternoon.

I stayed home, welcomed my older son, fixed dinner, hardly spoke with her father (could sense some tension, but not its reason) and went to bed with a sleeping pill.... Her mother stayed with her all the night.

I first saw her on Sunday, and she was terribly weak, tired and pretty much confused. She couldn't focus properly, and was falling asleep quite often. Her whole body and expression had changed so much since I had left for fieldwork, that I realized, yes, we were going for something serious. I talked to her oncologist over the phone, and heard the same thing he had already said to her mother: it was now a question of days, if not hours....

I eventually went back home in the late afternoon to pick up the two boys. Seeing my face, my older boy realized immediately that his mother was in a bad condition. Still he was reluctant to go, so I told him that this was his unique opportunity, probably, to make his farewell while she could still react and be there with them. And rushed back to the hospital.

Some hope came at the end of the day when an intern told us her platelets were high again and that she was treated for her infection with another antibiotic. I also learned she had an infarcted spleen. That I misunderstood for the bile. They were waiting for the acute phase to be over to consider an operation. So in other words she was stable, under control, or at least this is what I understood, or wanted to hear. Yes, this is what I wanted to hear....And this is what I communicated to everybody... Her oncologist told me after her death that the intern had over interpreted the data.... but this doesn't make any difference after all, and he did his job in reassuring us somewhat. And what about my own over interpretation....

So, we all came back home, her mother being completely exhausted. But a close friend physiotherapist who helped her already at the hardest parts of the Amsterdam TIL treatment stayed with her overnight. Brigitte you just cannot know how much you supported her and us in these hard times.

When I came back with the kids, on Monday, after informing my boss I would be away for a couple of days because of her terminal condition, she was already in a coma, her breathing, slow, erratic, deep .... Yep, it was really a matter of hours!! But so changed: her expression, her features. Not the person I knew. Not the body I had held in my arms, I shared my bed with. But still her.

How could it be so fast? She knew her days were counted, but she never gave away. But so fast!!?? What about the "stabilization"?

Our youngest son couldn't believe she was in coma. What is coma by the way?? How do you explain it to a 6 years old child? Sleeping, but not sleeping; she cannot move nor react, but she can feel and hear; she won't wake up back ?? All the above, plus the inexpressible.

He poked her, wanted to open her eyelids. He had drawn three pictures for her and wrapped them himself. We put the drawings on her bed. Then came the anger: against her who was leaving him; about the "world" that allowed such a thing. Yes it's difficult not to say: "why do you leave me?", when in fact she did not decide to leave at all. She was drawn away from us by this f.... cancer.

The older one, just cried, desperately. A deep, deep cry.... From the soul, from the guts.

Erwan, the Christian-sort of figure who shaved his head (sea one of the post), took the kids back home (well actually I drove them back home and back to the hospital). How do YOU come to be there, at that moment? As many others at other moments? Right there, at the right moment? Will (try to) answer it in another post (too).

And we settled for the night, her mother, her father and myself. Accompanying her to the next step of her life. Crying our grief out, talking to her, reassuring her and ourselves.... And this impressive breathing, slow, erratic, deep, as if she were in apnea, counting the seconds between each one, having the small alarm in our minds when she was over the "normal" second count. But every hour, slower and deeper.

Holding her hand, moisturizing her lips and tongue, refreshing her forehead. Sipping coffee (me) tea (them), leaving in turn everyone having his moment of intimacy with her. Long night, short night. The tears I hold for five years (almost) were coming out. And still are. There was no reason anymore to be THE strong, stable figure. But just the lover, husband and father of their kids, facing the fate of the cancer and the loss of the beloved one.

And then the sun rose. At 8am something I got a call from home (Erwan) asking for her state. Bad luck: the prepaid cell phone card run out... So I called back home, and woke up the kids. I talked to Hadrien, asking him if he wanted me to put the phone on his mother's ears "no, she won't hear".... So I asked if his brother wanted to talk to her. No answer, voices in the background. Repeating their names several times. Then I promised to call Hadrien back when she would have leapt over the other side. And I hung up. At that precise moment Pat's breathing rhythm changed completely. I checked on her and saw no more pulsation on her carotid, had the reflex to call on her parents "she's leaving". Two more breathings and then she started her journey, and our loneliness began.

Ohhh, shit, shit,shit. The same words she used with me about her liver mets....It wasn't unexpected, but still. Up to the end there is some small, small hope. Really. Some miracle. Even for the most obstinate scientific mind. Even for---- I dunno.

Why being so precise in the run of the facts? Why being so medical?

Because this blog is about melanoma; about the hopes, sufferings, joys, and pains of somebody who lived with it for 5 years, and fight against it with all the energy she could.  Because this blog is about a melanoma patient who struggled against companies and regulators to tell them that melanoma is about research and costs BUT ALSO ABOUT PEOPLE. About people who directly suffer from it and usually die so fast that nobody is ever able to start any lobbying action to put people at the center of the melanoma treatment. But this blog will be also from now on about people who live/lived, with somebody with melanoma and have/had to face a very quick descent to hell if their child, parent or partner cannot access the last scientific advances in that field. About people who helped us through their donations for the TIL treatment, and helped us giving their time, support and soul.

And also because it matters to me to remember the last hours and minutes of Patricia, with whom I lived 16 years. I shared dreams, plans, hopes, and laughs with her; I shared pains, doubts, and tears with her. We fought and made up after. We got married, three times, but we also almost divorced. We trekked in the Alps and in the Andes, we dived with sharks in the Caribbean, and skied in the Alps. We fought over movies - Hollywood vs Tarkovski. I love heat, she hated sweating. We valued our respective friends. I'm a settler, she was a traveler, but she eventually settled down and I started to travel. And we got kids.... Now our paths are separate.

She leapt over. Now WE have to live. With an elephant on our chest, and tears in our eyes. But we have to live and reconstruct our lives What else?

Alexandre

PS All my apologies to the native English speakers for my pidging English ....

seeing the light part of life

I am so sorry it has taken me this long to write. In part the explanation is purely physical. The decision was take to start a tomotherapy over 3 weeks. So On june 10th I started and in theory will be finished on july 2nd. The purpose is not curative (to get rid of the tumor) but to provide some pain relief for the growing tumor in my left psoas muscle.

So the silence started because I was in a LOT of pain and basically learning to deal with the painkillers (took a while and a pain specialist to tackle what was right) and then the radiotherapy immediately led to nausea/vomiting loss of appetite and fatigue all day long, so go and come back from each session and then lay down was all I could master some days. I loss my appetite for life too....and have lost some more weight (yeah about 10 kilos for those who have not seen me since the hospitalization you might have a bit of a shock).

The second explanation was the psychological burden of this past month. I have seen and met so many people in cancer waiting rooms with conditions 10 worst than mine and always wonder how can they do it. Well you just have no choice do you? I have been extremely lucky in 5 years this is the first time I am dealing with pain and the traditional side effects (nausea and vomiting for which nothing seems to work and the only thing I have not tried is a good old joint). So I am even in in more awe on cancer patients around me. It sucks, and days can be soo dark and lonely and you see the dots and cracks on the wall and thoughts just seems to go nowhere but toward finishing this whole thing. So basically I was in one of those dark spots and I shall make no effort to sugar coat this.

Within 3 days of starting the radiotherapy the pain started to diminish. I was able again to sleep on my back. That was a huge relief!  But then also monday last week my blood readings were a bit scary with regards to some markers that they look for in melanoma (LDH and CRP), they had doubled! which in my history has always indicated progression of disease. So my oncologist ordered another blood test this monday and then a CT scan yesterday because he was worried. The blood markers had reduced X 2 in one week to our relief, and the CT yesterday showed no new tumors some regressing, some stable and the tumor in the psoas has not changed. So that was a huge relief as the oncologist told me if he saw any new tumors he would have me stop the radiotherapy and start taking targeted therapy again (dabrafenib) which we know only gives and extra few months of relief and then I have nothing else in view medically speaking. So I was in a very, very dark place and started of course going there in my thoughts way too often (plan my cremation, funeral, make boxes of souvernirs for my kids, re-stating to my family my wish for active euthanesia if in too much pain, thinking of palliative care places as i do not see me dying at home, etc).

But there is always light. My parents presence and the enormous structural and affective support comfort me in ways that I would not have enough words to describe here. I am so lucky to have parents which not only do I love and respect but whom I just adore being with 24/7. Their presence, discrete and powerful has held me through this and reassures me that they "have me" even thought I am 43 and probably should be taking care of them. The kids have been amazing and have taken on their school and home duties and responsibilities with brio and pride. Alex is exhausted - it pains me to see his burden and anger with the situation, he is now at a conference in greece and bulgaria and my only hope is the air and disconnection from this cancer world will give him some release from taking everything on his shoulders. As on top of me his mother -who is old and has many health issues to many to be numbered - has not been doing well and this is weighting heavy on his and his siblings.

For now the hardest is managing the fatigue and the nausea/vomiting. I just came out of my psychiatrist and we made a list of all the drugs I am currently taking

-anti-virals
-antibiotics
-anti-anxiety/sleeping pills
-anti-nausea
-pain killers
-anti-imflammatory drugs
-stomach protection drugs

we agreed that a big challenge is to accept that currently I am in some sort of chemical prison (adding up the left over effects of the recent chemo and IL2 toxicities). So I and we have to for NOW accept this and hope after the radiotherapy we will be able to drop some of these drugs and have less pain and less radiotherapy side effects so that Alex the kids and I can enjoy part of the summer (we have many gorgeous offers of places we could go to and visit from friends)

I am still bald, but have a baby peach fizz all white, my eyebrows are white too. I feel like some the mean character is some James Bond movie but the kids are used to me now and it has been warm so I am not even bothering "covering up". F*** that!

So my hope is my next post will be a gorgeous photo of the ocean or south of france or the mountains with lots of fresh air!!!

Thank you all for the messages and txt and discrete ways of letting me know you were worried, now you know that so were we but we are breathing fine for now.

Shall your summers be filled with light each day!!!!

the "french" movie ending

The CT scan was done tuesday and I saw my oncologist in Brussels right after, he was very optimistic about my TIL treatment overall. My bloodwork looks good and then we went through the scan. Overall looks great, almost all tumors are smaller!

Since the first scan was done a month before TIL it is hard to use as a baseline as we do not know how much the lesions grew while waiting for TIL. Basically all lesions have become smaller...except one which is bigger now (about 3cm on left psoas that it was in that first scan only about 1.5cm). So we cannot be 100% sure it has "grown".

The cloud in the sky is that I have been having lower back pain since one week and I thought it was my period do did not even bother about mentioning this too much to him. Unfortunately, the pain has not gone away and is actually bothering me to the point I cannot sleep on my back anymore. It feels like a pinched nerve or lower back PMS.

So I went to NKI friday for my first 1 month follow up appointment with Prof Haanen to discuss the CT results. I had sent him an email the night before mentioning my back pain/PMS feeling and also the fact that I was 10 days late for my period.

When I arrived he immediately told me that the bloodwork shows that my ovaries have stopped working that I am pre-menaupoausal (do not know if this is reversible or not, this is a side effect from chemo). I was floored.

Then when I explained where I was feeling pain he seemed very concerned that the pain might be the lesion in the left psoas that has not become smaller and that maybe it is growing and thus not responding to TIL. He thought it was so strange just this one lesion would not respond, why? I could tell he was really annoyed by the lesion destroying the nice TIL story we had constructed until now. So was I. He asked me to watch the evolution of pain and let him know how I felt monday. He will revise all CT images on tuesday in the multidisciplinary team and discuss the possibility that I start radiotherapy in Brussels asap. The lesion is in an area of the left psoas is not operable I have had it since 2010 - so this would be the only way to deal with it quickly. Though my dad is furiously exploring through internet where I could access other ways like gamma knife, cryotherapy and nanosomething...

This was not the disney ending I wanted for this movie, so I choose a french ending. You know how in french movies sometimes you do not really know what the hell is going on and you just stare at the screen thinking so is it over? what happens now?

Anything can happen still. I have met people who have done TIL and they have had some new or growth at week 4 scan before regression at week 8 scan (seemingly because their tumors grew while waiting for TIL so they needed more time to respond).

BUT Yesterday while my mother and I waited for the train back to Brussels I allowed myself to be miserable, really miserable as we watched a storm from the window of a sushi restaurant. We both let it all out, watched the white little flowers (cherry blossom) fall and be trashed by traffic. We cried and just sat there. We both said we felt crushed because somehow the dream of a pure nice crystal clear "complete response" stamp which means you might be cured seemed to be out of reach for me now. That somehow I would have to take my "mixed" results and continue chasing melanoma with a new course of treatment probably already in the next weeks.

Today I woke up more optimistic. After all, I have had ALL other tumors respond (arm, shoulder, back, neck nodes, above left kidney and right buttock nodes... and no NEW tumors), my bloodwork is great and all other side effects are resolving, my energy is back. So I chose the french ending and say we just do not know yet. We just watch and see.

So we had a great day, I felt strong enough to go the park again with the kids and walked the whole round, even went walking to buy Hadrien his birthday favorite cake and we made mexican yummy tacos for tonight's birthday feast and we have just had a great family dinner. Perfect ending to a great day.

My oncologist emailed me back (I told him the whole Haanen appointment) and he is saying we should be cautious not to jump to conclusions for now. He will review images again as he did not seem convinced the pain I describe is from the lesion and he clearly wants to be sure before I start radiotherapy, to re-do a CT to see if the lesion is growing. I am sure him and Haanen will talk about this.

So stay tuned but expect a french ending...

Because love is worth it....

My friend Erwan Bellard and his family (including very arty sister) put together a little video of his hair sacrifice...I was both laughing and crying when I saw it a few minutes ago. Love is just worth anything really. Merci Erwan et famille, je vous aime.

The TIL speed

Coming out of TIL feels like a slowmotion "matrix" moment in life where everything is both slow and fast and it is about understanding both at the same time.

TIL physical recovery makes me realize that we normally live at such fast speed with multiple daily routines that we must perform to feel that we have "lived" (and it seems many of the routines are unnecessary). So here I am in stand still TIL freeze mode. And then there is....

Alex speed - he is taking such a heavy load with home and work and me and taking care of "us" - so I basically see him blaze through the many things to keep it all together and I just sit there exhausted from a short journey out to see the ORL or the eye specialist...

My parents introduce another "speed" to compare with -  they are now retired but they are still incredible active compared to how I am feeling at TIL speed! I see their energy from early morning to quite late and I envy them thinking - "it will come back"!...

The kids' speed - I connect with them the most as though they are physically the most active they also have moments where all that matters is exactly what is going on right now - the freeze mode (I notice this when we draw or engage with kapla block building or when they are eating something they like - as long as they are not in front of some computer screen)

So in case you wonder how I am doing: most days and most of my hours I am in some sort of "TIL freeze mode"  - And from there a day is actually really long with unlimited possibilities. Lots of moments, hours, minutes, seconds...everyone else seems to be rushing around me as I contemplate that minute.

At TIL freeze mode I read my emails with much more attention, I really see things and notice smells and sounds. Food seems to stay longer in the plate and I connect with it differently.

YET the annoying thing is that I am having such a hard time accepting this new enhanced capacity to be there (mindfully most times) because I have such a strong conditioning that normal is to act like a running workaholic rat. And this is tiring me too - these thoughts about getting back to normal create frustration, irritation and drain me. So hard to let go...

All in all I am doing better each day, each hour....I can walk longer distances, and going to and from the Drs appointments is becoming easier (even took the tram a few times during non rush hours with my parents who made me wear a mask). This week I had the ear drums placed in my ears and we started cortisone drops (hate this) and the test on thursday showed already it has improved from the hearing a 70 year old to that of a 60 year old. At least we are moving in the right direction.

I have been working what I can do from home (at this part of the year it is mostly supervising students masters thesis and catching up with reading) but I have a huge itch to go back to my office so I hope that is something that I will feel like doing in the next couple of weeks.

Next week I have the first post TIL CT scan tuesday (I will get results immediately and discuss with my oncologist) followed by ORL appointments wednesday and thursday and then a visit to Prof Haanen for follow up discussion of CT scan and blood work on friday.

Most importantly friday Hadrien will turn 12 and I am here to celebrate it with him. And I think that is the right speed for all of us.

in the woods still...

I have been back home for 10 days now. My parents arrived to help with the kids all the way from Australia. I have started slowly working from home and connecting with my professional life.

Are things getting back to "normal"? No. Am I well? YES and NO.

When people ask, email or text if I am well, if things are ok, or even if things are "good" now, I really do not know what to say. I am sorry I am not responding to phone calls or emails of texts of giving news as fast as you would want.... even though it has been 10 days but I am just completely and utterly drained and psychologically overwhelmed and still digesting everything.

Each days is different, but each day does not feel I am "normal" yet. I am a little bit better each day in the sense of I have less nausea, I am eating more normal meals and have more and more moments of energy where I can be with people and not be overwhelmed by normal situations like getting lunch at a cafe.

BUT I am still dealing with HUGE fatigue, not sleeping well, and managing eye and hearing loss because of the TILs. This week I had both eye and ear DR appointments as book ends. My eyes are doing better, vision is normal again, but I need to  be followed by THE belgian eye inflammation specialist and taking cortisone drops 6 times a day (I do not really know for how long but suppose a week or so and then we have to temper out). The hearing loss is really annoying like I can hear conversation but not the high frequencies and have tinnitus so I am having huge compassion for my father and brother who suffer from tinnitus. Monday I am getting ear drums placed (a little hole a plastic loop) in each ear so they can put cortisone drops into the inner ear and hopefully I can recover the hearing loss too. I have no idea how often I will need to go to hospital so that they can administer the drops through the drums as I cannot do this at home by myself. Wednesday I need to get stitches out too for the port and other moles removed so the week will be medically punctuated.

AND the cancer continues to get smaller as far as the palpable tumors go.

So am I well? YES and NO. I am still "in the woods" walking the path with no instructions...thanks for walking with me.

blooming!

From Hadrien's window I can see all the green around me, in just over 20 days brussels became green and especially the cherry trees are blooming everywhere around our house. On my drive to the hospital to remove the powerport catheter from chest (ouch) and a few nevi for science (thanks Brigitte ma chou chou for driving me) I was just in green land, sunshine and trees all the way from home to Braine where Olivier and his mega-surgical team got all done efficiently and pleasantly.

Arriving home from NKI thursday was easy in a practical sense but "being" home is taking time, what is my place? who am I here and now?

Practically: my house has lots of stairs - so I calculate each up and down move - I realize there is a big distance between how "I want to feel" and "how I feel".  Mindfulness helps me keep the gap smaller....but my brain is often on a holiday here so even meditation can be tricky. The breath in and out is the only one I can do.

Lucky for me Alex is the one who holds the house together as always only more now (grocery shopping, cooking, washing, cleaning, kids to school, homework, plus his own work and deadlines!!!!! did I mention came to take care of me and drove around and about to Amsterdam....and the house if full of greens and flowers everywhere) because even if I wanted to help him I could not. Of course you see him and "close to burnout" would be a good word to describe his current state. Those who are carers would recognize this state of hyperactivity where you do not even get a space to "feel" your own bloody stress, let alone the fear of losing your loved one, and I feel bad not being able to do anything...But this too is part of our learning I guess. My parents arrive on the 7th from Australia and I hope they can take off some of the load especially with the kids and taking care of me.

The kids are being wonderful after the "OHHHHHH" and "ARGHHHHH" of seeing me bald. They said I was ugly but not as ugly as through skype and yesterday they even said lucky your face is the same (whatever that means).  So they made me model a few looks of hats and scarves I could wear.

Even the cat looked at me with weird eyes like "who is that?" I wanted to cuddle him but then remembered all the advice I got before the released me about infections etc:

1) for the next 3 months I am at very high risk of getting infections which could land me back to hospital and so avoid crowds, movies, big auditoriums, public transport and sick people and kids....I am a mother, take public transport every day with the sardine rush hour people, and teach in big auditoriums...lucky the academic year is over. Will buy some masks for the tram that will surely help with keeping the kids away :(

2) for the next 2 weeks I will still be extremely tired and often need to nap and rest, my loss appetite and nausea (from the chemo and just conditioning to bad food at hospital) will also last a few more weeks, small meals of anything that appeals rather than trying to force a normal meal - so lucky me I had gained so much weight these past 2 years I can finally fit into my clothes again!

3) take time, take time...and take time.

No advice was given with how to deal with the mind, the psychological part of TIL, by that I mean the tumors are melting away day by day.....I am just in awe of the immune system at work, have gone from horrible pain to zero pain, regained full mobility of arm and visibly the areas where huge tumors where growing in arm and neck line and freaking us out around easter are regaining a "normal nothing ever happened here" appearance.

I really catch myself just saying "here for now it is like that", I remind myself to not become too attached (intellectually I can) but part of myself is just jumping up and down of joy integrating that for now the cancer is going away and continues to go away daily...

And none of this would have been possible without all of YOU, so do you see it now?

BLOOMING!!!!!

You can go home

Sweet, sweet words from Haanen. My bloodwork is ok, I had the eyes checked up and will need some cortisone drops which I have started today (6 times a day), still need to take 2 antibiotics for 6 months and have to have a mole removed in 1 hour (for science) and the port friday (because it showed positive for bacteria)....so all things considered I think I am very happy that I will be holding my little boys in my arms again after these long weeks.

The tree of life goes on...

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.....

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....

walking on the moon?

NKI has emailed back they will soon send the surgery dates and will make the anesthesiologist appointment the same week (yes, means one trip less!).

A melanoma brother of mine Jonathan told me he thought if I make it through TIL I would be probably one of the first melanoma patients to have been through all the treatments we know of for melanoma, I thought about that and kind of felt like "a small step for mankind..." moment. Nicolas Van Baren from the Ludwig Cancer Institute started a summary graph of all my treatments since the beginning and my husband Alex just completed it and I must confess I have done A LOT of treatments....maybe I am kind of walking on the melanoma treatment moonscape.

For those that are curious I will put a link to a pdf.

Again just for today I want to thank all the people who continue sending emails, love and support in all kinds and shapes and forms. I am making a list of all donations that keep coming our way so that I can send a thank you proper email to each of you by the end of the week, thanks, thanks, thanks!!!!!!

We are all ONE: thanks for all the co-creators of this adventure....

Portrait by Eddie - FEB 2013

 Dear all,

We want to say here that we were speechless to see at what speed we are receiving emails of support but also financial support to help me afford the 30,000 target that will help me pay for the costs of the treatment. The email by Ilios Kotsou was only sent last week! But we were also speechless because the support is not only coming from right around here, but also from all the way over there, and beyond…let’s be clear: even people who do not even directly know me but who know me but through a loved one are supporting us. I often say (influenced by nondualist authors that hold me in the darkest hours: “we are all one anyways”) but really? In this new treatment adventure we are concretely co-creating interconnectedness (sure it is a not a CERN evidence-based quantum physics experiment, but still!). I feel like we are all buying a lottery ticket or going to the races and betting together or something. So last night I suddenly felt this anxiety of being “the horse in the race”, but then I thought: hang on a second… the chances are better than the lotto and I am a good bet! Indeed Prof Haanen said 50% response rate, 10-15% complete responders (remission). Then my next anxious thought was: should I still be hanging onto life so much??….and back came the quote from an good old read:

Here is a test to find whether your mission on earth is finished: If you're alive, it isn't.

Richard Back (1977) in Illusions: The Adventures of the Reluctant Messiah

And this is how we hope the story goes...

And this is how we hope the story goes....Here one of the first patients to receive TIL at MD Anderson, one of the US centers currently doing TIL. Her protocol is slightly different than the one at NKI as her IL2 was spread over weeks. I love her spirit!

What is TIL?

It is tricky to explain,

Here is a very schematic representation of the TIL (Tumor Infiltrating Lymphocyte) treatment

and the research of Prof Haanen as described in the NKI website

https://www.nki.nl/Research/Faculty+and+Research/Divisions/Immunology/Haanen.htm

the naked truth

Dear friends,

So we just came back from the mountains - pure white bliss for one week thanks to Alex's family as they have a sweet chalet in Valais...I had a bad cold and was sick as can be, but the smile on the kids at the end of a day of skiing was worth it. My brother Eddie and nephew Carlo were there like 3 year olds new to so much snow and discovery of snowboarding.

On our return our cat minuit gave us a warm meowwwww welcome (thanks Kath for the cat-sitting, again!).  Home sweet home.

There was a letter from NKI and my heart started racing, it was for my first anesthesiologist appointment before the surgery to harvest the TILs so I was excited to get started - BUT I was actually expected to be at the hospital last week! so anyways, had to contact them to re-schedule the whole thing...since it is holidays the whole week in the Netherlands I suspect I will not hear anything until next week.

My friend Ilios Kotsou has organized a fundraising mailing to a big list of family/friends/collagues as of yesterday to help us afford the whole thing - you must have all received the email by now. He just makes it all seem so easy...like of course this is how things should be.

I am very touched by all the emails and messages and suggestions of how you can help us. It is so hard for me to step into this place as "asking for help" as I feel naked, bare, kind of just standing there saying "yes we need help for this, cannot do it alone". In my mums' side of the family (the Angulos')  they often talk about the pride of being able to do everything alone, never cry, never complaint. I guess I have a bit of that (though my mum says I was a cry baby).

But I must admit today I just have a feeling of incredible trust of what is, and this is exhilarating. To think and feel that "it" might be possible to extend my life, that yes maybe I could still enjoy a longer life with my loved ones of not just months but years, and that WE are actually co-creating this possibility. My faculty and colleagues at SBS-EM had already held my hand when I went to the last trial in the US and I was just taken aback by the wave of love and generosity to help me face those costs. It almost feels like we cannot hold all of that love but we are actually pretty stretchy and you know what? actually all the love fits right in...

Will keep you posted