What an anniversary!
Quite an achievement provided the survival rates curves! Spend some time Googling this and you will, for sure, read same data I did… I should already been dead by a long shot… But here you go… still there to blog my feelings, I better understand why my wife asked me not to look at these (I guess she did 3 years ago though!) as it could damage my optimism.
For my 3rd anniversary, I could get my haematologist invited to one of our Rotary Club meeting so that all my friends could get a better understanding of what AML means and why I am difficult with hygiene, etc… He did a great job to focus on my specific decease ( 🙂 …) and to make it accessible to the audience (he is professor in the Liege University ULg) but it did put me again in front of reality.
Feeling better does not change statistics and overall data in terms of survival within 5 years… It also reminded me that each time there was a split in the curing method decision tree, I was in the worse scenario and that for 3 years. That made think that I am a survivor and also that I am right to listen and comply to the doctor’s orders even if my feet are now swollen for whatever reason!
That one hour reminding me what I have been through opened my eyes on two main major contributors to still have me alive.
It is obvious that I have been “lucky” to be young when it happened as I had to face the hardest chemo therapies as this is what you get when you have a leukaemia as it is spread everywhere in the body and not restricted to a specific tumour in the body. On top of that when you go to radiotherapy, same stuff, this is spread to the whole body. So now that you know this and mix it to a previous information on where I systematically stand in the decision tree it explains why they pushed me to the mini allograft instead of the normal allo bone marrow transplant. I remember being frustrated that I could not get the “normal” transplant but I realised that the surgeons rejected the idea for me to go again in a white cells deficit leading to potentially lethal infection. I also realised that 15% of the patients going through these transplants were not surviving the first 100 days after transplant. So I thought that the other option would at least provide me more comfort to get my new marrow. It was indeed much easier than spending weeks in a sterile environment, I had a transfusion then I got back home. This type of graft is indeed a soft way to get a new bone marrow as it avoids a heavy chemo therapy and 8 hours of total body irradiation (TBI) or being like a roasted chicken turning every 2 hours to be hit by all sides. Even after the 1 hour I had to go through, the side-effects were awful so somehow I am thankful I could not get through the full procedure.
The second main learning I did take from the presentation was the donor experience! I am the catcher in this story but what does this mean from a pitcher perspective? What has a donor to go through? Two events made me think about them… Once in the office talking to a colleague about my story, his colleague started to get excited and when I asked her why she reacted that way she explained me she is a bone marrow donor… It was a surprise to see someone who is actually volunteering to save lives of people in my condition and I still remember that moment. This is what I call a moment of truth that marks you and puts you in front of the reality.
The second moment was still the presentation we did get from my haematologist when he explained what the donors have to go through. It made me realise that the donation process is not as simple as it may look like. It is a commitment to become a donor but it saves lives! Having read this, it made me clear that the end-to-end process is relying on a solidarity chain based on volunteering, high-end engineering and scientific/medical knowledge…
So yes, 3 years and am still there, still having fun and hopefully being a better man, dad, son, colleague and husband than before and if not, please do not let me know… LOL. I hope that my next week monthly visit to hospital will be positive 🙂 anyway I’ll keep you all posted when there will be news.