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...