I know it has been a long time now since I shared news via this channel… Hope you all are fine with the featured image as it was just to show smile and photopheresis can go well together! For sure when the nurses have some sense of humour.
I must admit that if all in all, I am fine, I still believe after my car crash (if we are friends on Facebook, sure you have seen some pics) that I have now started my 3rd life J and it was a relief to hear that my concussion was minor, thanks again to my hospital and the reactivity of the haematologist who took care of me even if the matter was in no way related to my AML. In all honesty it did hit me psychologically more than I thought it would… this was in no way a pleasant experience but more of a recurring nightmare with a big noise and a shock. Thanks to the defensive driving trainings that provided the right reflexes and for sure the solidity and technology of my car..
So far so good in 2016, no major glitches (even no issues at all and I keep my fingers and toes crossed), even better, the professor told me that my regular visits are not monthly anymore but quarterly which demonstrates a stability in my treatment and steady recovery. Nevertheless I keep my photopheresis treatment 2 half days every other week and 24 pills a day! Bottom line I feel great on the health front!
I truly hope that the treatment will end in Q3 so that I can also stop the different medics that I keep taking because of the photopheresis and so really resuming a “normal” life (if that even exists). I do not even realise that I have been already through this 60 times already and scleroderma is still there very much less than when we started indeed but hell that stuff is tough! I’ll make it but it is getting boring… (ok I know I also bore quickly J).
The next main date is April 12th as I will go to my yearly battery of tests and get my results first week of May… that should give me a good view of the bigger picture and a formal status on how my health is doing… The good news is that from now on there is no bone marrow test anymore… and that is a plus, believe me this is no fun.
On the other hand my scleroderma fading a bit away I decided to make my come back on the golf course after 18+ months break and must admit I will need a bunch of more hours back on the driving range to attack a green! But even if it will take time… I keep being positive and even I am not ready to play my “official” handicap, I’ll do my best to at least have fun on the course and get healthier being outside taking some fresh air!
My frustration for this first quarter of the year is that I could not make it to the LotUZ meeting and will recover in May but I keep this as an objective this year to build a capacity in the University Hospital Center of Liege to deal with folks going for bone marrow transplant and bring them extra care (beyond what the hospital would deliver). This is for me important to give part of what I did receive when I was down! Bringing methodology and structure will help. My Rotary Club presidency stopping end of June, that will give me a bit of time to help this endeavour.
I also still have on my task list to turn this blog into a book. I have some content as you can imagine if you read the previous 50 chapters but I would like to bring a spin to this that is not only chronological but also add some pedagogy and understanding of how my brain did work through all this so that some can relate and get some hints of paths that may work for them. Sure you understand that lots of ideas, concepts, etc… are knocking at my door and I guess summer time will help me landing on my way forward.
So, I keep moving forward and do my best to make sense to my family and friends and give back to the society that supported me during my hardship. I thank you all to keep reading my thoughts and also sharing to me face-to-face when we do meet. Please keep inspiring me!