First of all, I started to add hyperlinks in the first 4 chapters to help the understanding of the medical vocabulary. I will not add the hyperlinks systematically but they are easily retrievable from the previous parts of my story.
So, this is it, I am now wide wake in my room, still alive and my family around me! My parents and my wife are visiting me in rotation… I preferred not being visited by any one else even my children as it could have shocked them… I also take the opportunity to thank my parents, friends, neighbours and in-laws for taking care of them. Special thanks to my good old friend who damaged his car while going to the theatre with the kids, he also made sure communication about my status was flowing amongst my friends.
I also remember the visit of a close friend who came as his father was actually passing in the same hospital. My neighbour who is also my golf buddy came in my room as he was also hospitalised for dental surgery… These visits were really nice to have at that time.
Now as mentioned in the previous chapter, good news are around the corner! My chemotherapy is about to end after these three weeks and after an epic bone-marrow extraction (I had a vasovagal syncope…) I did get the amazing news that I was in remission, the first great news I did receive since I got hospitalised. Of course it did not mean I am cured whatsoever but you hold to whatever is positive in those days. So at that time, leukaemia is gone after the chemotherapy and my tummy looks like a patchwork. Not that I feel any better but now we can evaluate next steps for what I have left.
I am now getting heavy cares everyday due to my scares and also have to adapt myself to the colostomy. I also start to go and sit on a seat so that I start mobilising my body. Luckily, my wife could spend Christmas and New Year eve with me and I still remember these days as I was so glad that she was with me for those two nights.
Till mid-January, I restarted to eat, drink, sit, walk and all this with a colostomy and with pipes plugged in my body and little by little could also swallow my pills. Everyday was showing some progress until I heard that my white cells reached sufficient level for me to go home for 10 days. Wow ten days at home and enjoy house and family for a couple of weeks… A place I did not expect to see again four weeks before. These days were amazing and made me thing of what would be my future, home, work, social life, etc…
The deal was to go home, stay there then come back for a consolidation chemotherapy as I was on the waiting list for a bone marrow transplant. The chemotherapy is a necessary step to get the body ready for the next major milestone, the transplant. This step was going back in aplasia and wait for the body to recover! Sounds easy and relaxing but those couples of weeks were like years as I was fully conscious, short nights, no opportunities except watching television. Fortunately, all went as planned and I could then go home to wait for the transplant!
Being at home was so great! That was my Valentines day present to my wife in 2010. Even if at home, I was still getting daily cares from nurses visiting me every morning to take care of my rake style TV antenna and my colostomy (need to change part of the equipment every other day, if all goes well!). All I had to do those days was to watch TV and get some friends and neighbours visiting me… For the ones who know me, you can imagine how boring this could have been! I watched a couple of terabytes of TV shows bought a 51″ LCD screen and got bored to death, if I may say so!
After two weeks I called my employer to check whether I could resume work. My boss at the time agreed that I can restart slowly on my own pace and found me a couple of interesting reviews to lead virtually from home. I’ll never thank him enough for that opportunity! It was really hard for me to just focus on my hair growth (yes… They are back!) and I was missing some action. So on March 8th, the doctors accepted for me to work but from home only! God bless them… After two weeks I could be back in business. I was 54 pounds lighter, no hair and could barely walk from the sofa to my office but who cares, I could focus on something positive and add value to something.
Till the transplant, no food restriction, I had even been told that after the transplant I would loose another twenty pounds. So, being proactive, I did put on these 10 kg and never lost them since… I’ll get back on that subject at a later stage. Special diet will be one of the major impact on the family. Life after transplant will be the subject of the next chapter.
Due to both abdominal surgeries, I was supposed to wear a retaining belt to put my abs at rest but with the colostomy bags, this was not possible… No need to explain the impact of such a belt on a colostomy bag! As I could not refrain myself from moving in the house, I did develop an abdominal hernia. This kept growing for months and led to more problems mid-term!
So here we go, cruising to the transplant… I did get a phone call confirming they have a bone marrow donor. The tentative transplant date is April first… This is no joke!
So I thus need to be prepared for that… There is a battery of test to be completed to check whether I am fit for the transplant:
– functional breathing test
– heart echograph
As a side note I really wanted to tell you a funny episode with the dermatologist… I had to get two biopsy, one in the mouth in one on the tummy. She said that she wanted to take her sample below the belt to make sure there won’t be a visible scar when I go on the beach… (check pictures on Google for “colostomy and abdominal hernia”, I prefer not to add these in the text as it is still painful memories) you will see that there is no way to see me ever again in a swimsuit…
But the most painful one was the radiotherapy as that one gave me nausea after feeling like a grilled chicken rotating every 15 minutes. Once again I kind of felt good seeing other folks having to rotate four times two hours instead of my four times fifteen minutes! I used the recorded message I used to stop smoking to relax during the session and it worked (if there is interest I also can put together an article on how I did stop smoking).
Why was my exposure time eight times less than some others? The haematologists made the decision to go for a mini-allo transplant instead of the ” full” one as the surgeons were not positive about me going back in aplasia as the infection risk was still to high. The good part of this is that I won’t have to go in sterile environment (really painful as I understood from “colleagues”) and so my comfort might be slightly better.
So now, hair growing, roasted like a chicken, expanding hernia and all lights are green to go for transplant and am ready to get bone marrow from a foreign donor! This will come in next chapter.
1 reply »