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!!!!!